Musings of a Heart Family

Poor Baby

2012-02-09T15:48:00.001-05:00

Don't say it. Don't say "oh, poor baby" about him. Don't even think it!

Born missing part of his heart, not being able to swallow, or breathe without extra oxygen. Getting stuck once a month, xrays, anesthesia, surgery, surgery, surgery... nobody said any of that was easy. But it was worth it. Every single moment was worth it.

Step back a moment and see things from his perspective. Did he know pain? Sure he did, but it was normal for him. Its like being born with blue eyes. Everyone can see your eyes except you. You are born accepting the fact you have blue eyes without seeing them. Maybe some day you need glasses. Ehh, no biggie. They just make life a little easier, right?

Tommy was born with his birth defects. He accepted them as a part of himself. He was not aware that not everybody was born as special as he was. WE feel his pain because WE are different, not him. WE understand what it feels like to have a whole heart and how to breath with our noses. For him, he was just accepting he had blue eyes.

Watch his videos, look through his pictures. You'll see nothing but smiles from a kid that thought he was just like you and me. Eventually, I would have had to break the news to him he was different. And not in a bad way. I mean in a beautiful, unique, special, out of this world way! He rose above the adversity that he didn't even know he had.

He will forever be my hero and my inspiration. Congenital heart defects ended his short, spectacular life, but nothing will ever destroy his spirit. He never was and never will be anybody's poor baby.

Giving Thanks

2011-11-16T03:29:00.001-05:00

Thanksgiving should be a holiday with no strings attached. Should be. But I can't help but feel somber during this time of year. Tommy was alive for two Thanksgivings. Both of them in the hospital and very sick. He never got to spend this holiday at home with his family and neither did I. I ate a nice dinner provided by volunteers and had plates of leftovers brought to me both years.

I gave thanks both years that he was alive and although sick, I was thankful for just one more day.

The first Thanksgiving after his death left me with a tremendous heartache and feeling like a void would never be filled. I thought I would never be thankful again, but the feeling passed with time. I learned to enjoy my life a little more and how to ignore the constant stabbing feeling of loss for a few hours at a time. Trust me, there's not a moment that doesn't go by that I don't ache in every nerve of my body. I've just learned to hide it.

I guess the best analogy I can give for my grief is a dog on a shock collar. You know, the kind that is underground to keep them from running into the road. It gives a mild jolt if they cross the boundary. At first, they have no idea what is going on and keep getting zapped over and over until they realize just to stay away from that place. They can run around the yard happy and content, but they will always be tethered to an annoying collar that they can feel. It can feel uncomfortable at times, but it's always there, but its bearable as long as they don't cross the boundary. One day, maybe playing fetch, they absentmindedly leap over the boundary to get that incredible shock again. They knew it was there, and tried not to go there, but it was inevitable. Unavoidable.

But do you know what? I'm thankful for the pain. It means I FEEL something. I am no longer numb. I cry, I mourn. I love. I'm thankful to have been given the gift of Tommy. With all of his sickness, machines, accessories, and endless doctor's visits. For every hospital stay, every blood draw, every suture. Every moment we spent "fixing" him was one more moment he got to spend with me. One more moment I got to be his mommy.

I've mentioned before his last moments, how he was watching "Nemo", then gone, but there was an in between time. A precious, precious moment I will carry with me forever. When he started to decline, he wet his bed and the nurse came to change his sheets. I picked him up and held him against my chest, his head on my shoulder. His breath was short and labored. We turned on his oxygen and he curled his hands into my shirt as I rocked him. The nurse said he was sleeping, but really, I think in hindsight he was just too weak to open his eyes. He held me and I held him and we rocked, his heart next to mine. He was hot and sweaty, moistening the front of my shirt. I rubbed his back and whispered how much I loved him in his ear. Less than an hour later, he would be resting his head on God's shoulder instead of mine.

I got to hold my son for a few short minutes before he died, not knowing it would be my last. It was a moment of peace, and pure love. Just a mother and her son, embracing on a tough night. For that, I give thanks.

Five

2011-09-25T04:48:00.000-04:00

There would have been five candles on your cake today. I like to think you would have been able to blow them out. In Heaven, you are still five. You are strong, healthy, laughing, playing, running. Five years ago, I was given the greatest honor by becoming your mom.

Kindergarten.

Picking flowers.

Singing.

Hide and seek.

My heart sings at the thoughts of what you could be doing today. They are bittersweet moments in my mind.

I miss you so much. Today, you would have been five.

Three Years Ago

2011-08-11T01:07:00.000-04:00

It's been three years. Almost. I'm a little early, but I was inspired, and I had the time to put it together. I heard this song a week ago and I cried and cried and cried. It was so appropriate for my sweet Tommy.

Inspired

2011-05-09T08:24:00.000-04:00

Yesterday, for the first time, I was able to write a poem without being in pain. Usually my poetry comes from a dark, sad place, but yesterday, the words flew out of me as I smiled and pictured what Heaven must be like for Tommy. I hope you enjoy reading it as much as I enjoyed creating it for him on Mother's Day.

My Little One plays in Heaven tonight
Among the clouds so soft and light

He slides down rainbows trying to catch the stars
Using his halo like he's driving a car

His wings are covered in sparkly dust
His nose is a little smudged, but nobody makes a fuss

His beautiful eyes make the angels sigh
with their twinkle of blue that never cries

He chases his friends on pudgy bare feet
And giggles when he catches them with rosy red cheeks

He tumbles in the clouds pretending to be a plane
His stomps make the thunder and bring down the rain

The wind is his hand playing with my hair
The sunshine on my face, his kisses, telling me he's there

I miss you so much that I should come undone
But how can I cry when Heaven is so much fun?

Down Came The Rain

2011-04-25T03:52:00.000-04:00

Today was Easter. A time of new beginnings. Springtime, and of course, rain. It always rains on Easter. All of my childhood memories have rain on Easter.

The rain reminds me of Tommy. After he died, it rained for days. As if the Earth were crying tears with us. All I could remember was the day Tommy looked out the front door at the rain and got this look of "I get it!" and began to sign the motions from "Itsy Bitsy Spider". What a tremendous moment to see him realize that he knew it was rain and he knew how to tell me.

Not a rainy day will go by without that memory playing in my heart.

Tommy has been heavily on my mind for other reasons today. My sister is having a baby. I'm trying to decide how I feel about passing down some of Tommy's things. I don't know how she would feel either. When I have a free day this week, I plan to go out to the shed and open the boxes of his things and see if anything speaks to me. I will know what to do when it feels right.

I know this is short and sweet. My life is growing in new directions and I don't know how to include them on the blog just yet. I don't want to shift gears from posting about grief and memories to day to day life without some sort of segue. I'm working on it.

Rock Star

2011-03-30T02:46:00.000-04:00

My son was a ROCK STAR! There's no other way to say it. Even before he was born he was awesome. His name started out because I wanted to name him after a friend of mine named Thomas. That ended up being Tommy Lee. His dad and I looked at each other when we were coming up with the name of our little guy and we both knew it as soon as it came out of his mouth that would be his name. Both of us have always been huge Motley Crue fans, especially Tommy Lee.

Our son would have to be born hard core. He would have to fight for every breath, every heartbeat. Naming him after a Rock God seemed natural. How bad ass is Tommy Lee when he flips upside down and drums in the rotating cage? Fearless.

If you look closely at the picture above, Tommy is holding his dad's drumsticks. They're Tommy Lee signature series. Fitting for my little rock star. He was fearless, charismatic, hard core. We named him just right.

Walking In My Shoes

2011-02-23T02:56:00.000-05:00

Tonight, there was a debate on Facebook about abortion. I know, HOT topic and everyone is set in their beliefs. I'm not here to convert you, convince you or belittle your thinking. I'm here to merely share MY story. See that word? It says MY. Nobody on this Earth can have it, change it or live it. I'm not here for judgement or acceptance. I just feel the need to tell another side. It's food for thought.

My pregnancy with Tommy was not an accident. It was a conscience decision made by my husband and me. I was 34 and we wanted just one more, maybe have a little girl if we were so blessed. It was a hard decision because my pregnancy with Brandon had been very difficult. So, in Spring of 2006, the stick had two lines. I went to the doctor to confirm and found my due date was around November 12. For those of you doing the math in your head, yes, my Heart Baby was conceived on or around Valentine's Day. It all sounds so perfect doesn't it? Rob and I were able to both start new jobs around the same time doing things we both enjoyed. The kids were able to get into a nice daycare that happened to be next door to Matthew's school and was on the bus route home from my job so I could pick them up.

You have to understand that life had never been this good for us before. For the first time, we were working "career" jobs and getting ahead of the game. We had a mortgage, cable tv, and a tiny bit of fun money. Not bad, because a year or two before we found ourselves practically homeless. With life this good, how could we NOT have a baby?

I had it all planned out. Daycare, maternity leave, savings, baby stuff. I even felt confident enough in my 4th month to change jobs to something literally right around the corner from home so I could walk to work. It was good for me, the baby and I loved the change.

Early in my 5th month, I was working a Sunday afternoon. It was light work, very easy on my growing belly. Until I began to bleed. My pregnancy with Brandon had been partial placenta previa, so I was upset, but knew it could be something we could treat. I was instructed to lay down for the day and come in Monday morning for an ultrasound. I had an ultrasound every day for nearly a week and nobody could explain to me what was happening. They were positive it was not placenta previa. I was scheduled for a level two ultrasound at Medical University of South Carolina. (MUSC)

I'm sorry. I have to pause.

We all know that day that Tommy was diagnosed with congenital heart defects not compatible with life. I was given some options. Do nothing, multiple surgeries on my newborn son, or terminate. I was told he would be a very sick little boy and even though surgery usually had a good outcome, nothing was guaranteed. I had three weeks to decide to end my pregnancy. I was put on bed rest, I had to quit my job. Our income was now down to half. The kids had to be taken out of daycare. I looked to my husband for support, but he couldn't cope. He told me termination was my decision.

For three weeks, I researched his heart defect. I found his particular defect was so different and difficult that I could only find bits and pieces about it. At the time, there was only an 83% success rate with the surgeries he needed. Could I put a child through that? Could I go through that? I was almost 6 months pregnant and he had never kicked. No flutters, no hiccups. Nothing. I was not his mom. I was just a woman with a positive pregnancy test and baby that would die when he was born. I sat on my porch and cried. Trying to feel SOMETHING for the child growing inside me. There was nothing there. I felt so empty, guilty, alone. What right did I have to bring a child into this world to let him suffer?

I cried more. I prayed. My doctors didn't even wait for the depression, they gave me Prozac right away. I went to Maternal Fetal Medicine and genetic counseling. Nothing. Three weeks of the most empty feeling I have ever had in my life. I was on the cusp of termination. Ready to let it all go and get back to my life.

And then he kicked me. Had he not, we would have never known Tommy. You would not be reading this blog. I would have aborted my sick baby who in my head and heart was not going to live anyway. But he kicked me.

I don't regret contemplating abortion. I'm not ashamed of my decision and I will never blame a woman if she makes that choice. Because that is what it is. A choice. It was something I had to wrestle with. Something only I could decide. In my head, I was sparing both of us the pain, and eventually, there was plenty of pain to go around.

Do I regret having him? Not for a second! Yes, he did die. He suffered through pain, procedures, surgeries, feeding tubes, needles, illness, and countless stays in the hospital. But when it all comes down to it, I had to go through the process of letting him go before he was born. I had to decide I was ready for all of it without really knowing what I was up against. Had I been a younger, less experienced mom, I don't know if I could have had him. Every moment of his life was a heart wrenching, beautiful battle. I am stronger because of him, but what if I couldn't have done it all? Should I have had a child I could not care for?

Deep, sensitive questions for another day.

Lump In My Throat

2011-02-09T11:21:00.001-05:00

I am amazed. Touched. In awe. One tiny boy touched so many lives and changed people. He brought a face to heart defects, strength, and hope, and showed people what it was like to fight with everything inside of him. He taught me how to live every moment like it was my last and to fill my life with LIFE.

I didn't fully understand the definition of stubborn until he showed me. I didn't understand how to fill a room with a glow of happiness until I saw his smile. We worked hard for that first smile. It didn't come naturally, it came out of hard work and building trust. Nothing he ever did came easily except the fight inside him to accomplish anything and everything.

My SON. Tommy.

I rode the roller coaster of my pregnancy, knowing that he would be born sick and would need surgery. I had never seen a person go through heart surgery, much less a baby. My baby, who weighed barely 5 pounds and who's heart was a big as a grape. I thought I was all alone in the world. I could have never been so wrong.

I began my journey with congenital heart defects with the results of a fetal echocardiogram and the soft spoken, but firm words of Dr. Shirali. He told me my son could NOT be born premature. He needed to be strong to survive. He gave me the option of termination. I had about three weeks to decide, and to be frank, I thought about it. I had no idea what a child with a heart defect would be like, but I felt like God had chosen me and from that moment on, it was no longer about me, but my son. I took on a "gotta do what I gotta do" mentality. It didn't matter that I was scared, worried, frustrated or nervous. I threw it all away, sucked it up and faced it head on. I had no idea what I was facing.

Tommy would be born premature, but the second he entered this world, he came out fighting. I didn't know what to expect. He was 7 1/2 weeks early and his heart was missing parts. The last thing I expected to hear was the loudest, most stubborn, lusty cry coming from that tiny creature! I cherish the memory. I would not hear him cry again for a year and a half.

Tommy never did what the textbooks said. Ever. Then again, neither did I. When I was told Tommy needed a trach and one of his doctors mentioned an MRI to rule out why he couldn't swallow, I did the research on my own and figured out what they suspected. I refused to give consent and had Tommy's nurse call the neurologist so I could find out why he hadn't had the MRI yet. He asked me who had told me about the syndrome I mentioned to him. I told him "nobody, but I'm right that what's you're looking for, correct?". There was a pause and a confused "yesss". I'm guessing he wasn't used to the mommies knowing such big words! Five minutes later, a certain cardiothorasic surgeon was on the phone with me wanting to know why I was refusing consent and why was neurology calling him? I told him my concerns and he laid down his with me. For the first time, I had fought for my son and shown the doctors I was the boss, not them. Only after I was confident that the trach was best, did I give consent. He also had his MRI by the end of the week. He didn't have the syndrome, which only perplexed everyone even more.

That small child taught me so much about what I had deep down inside me. After his first heart surgery, I was finally allowed to see him. I had no idea what I would see. He was covered to his neck with a blanket. I was told his chest was swollen and still open, covered by a protective film. My child might not live through the night.. I wanted to see. To this day, I will never forget seeing his heart beating. SEEING the movement of his heart beating inside his body. I thought to myself if he is strong enough to live through this, then so am I.

People used to tell me how sad it was to have such a sick child. He must be so upset to get stuck all the time, to be in the hospital, to breathe with a trach. I would tell them he's never known any differently, so why would he be sad about it? As far as he knows, everyone breathes through their neck and is missing part of their heart. That got people thinking that life may not be as bad as they thought it might be. If Tommy could do something despite every challenge he faced, then why couldn't I?

I don't know if I was born strong, but he brought it out in me. I faced things I never imagined. I faced his mortality well before he ever died. When he was 9 months old and we were told his lung pressures were too high to proceed with his next heart surgery, we were told to take him home. His oxygen saturation was already in the 60s. He was blue and tired. The DME came with oxygen and got all the paperwork in order to release him. We were basically told there was nothing that could be done and he just needed to go home and grow. There was no way I was letting them discharge him. I sat sweetly beside his bed every day for 4 days. On day 2, they moved his crib to a private room so his primo spot could go to a baby returning from surgery and could be right next to the nurse's station. Fine by me. It meant I had a tv to watch between naps. By day 4, his surgeon had formulated a plan. I think he was tired of seeing me every morning when he rounded. He also knew from our past that I wasn't moving from that room until somebody fixed my baby.

I'm beginning to wonder if the stubborn came from necessity, or heredity. I'm seeing my son and I were more alike than I realized. If he were alive today, I also think he would have a blue Mohawk to go with my pink hair. God, I miss that kid.

He made me who I am today. A small boy with a broken heart reached out and touched the world with his smile. I am proud to be his mother. I am honored he was my son. His short life had a ripple effect on the world. So long ago, when I felt like I was the only person in the world with a baby with a heart defect, I turned on my computer and started looking for others like me. I found out there was another planet!

To be told having a heart defect was a rare event was not true. The media, the internet, and many organizations have sugar coated CHD. An average of 87 babies are born EVERY DAY with a heart defect. It is the number one birth defect in the country and it takes more lives in the first year that all forms of childhood cancer combined. Tommy has a lot of company in Heaven.

As I continue my journey as the parent of a child who has lost his battle with heart defects, I want to be just as stubborn as I was when was an advocate for him when he was alive. It angers me that everyone is looking for the gold at the end of the rainbow. To get to the end of the rainbow, we need to walk in the rain. The prettiest rainbows come after the harshest storms and I'm looking to pick a fight with the biggest thundercloud out there. We need to stop sugar coating what life if like with a CHD! It's hard, it's stressful, it's sleepless nights. Some fortunate parents are able to have their child repaired with a simple procedure, medication or just time. More of us face multiple surgeries, brushes with death, fear of infection, growth issues, behavioral issues, transplant, and eventually funerals. It's not pretty.

CHD needs awareness, yes, but it needs funding and research. Statistics show that deaths from CHD have declined by 39% between 1979 and 1997, but 41,000 still died as a result of a CHD during that same study. Current statistics show 4000 babies die a year from CHD. The average number of people living with a CHD at this time is about 1 in 100. About 87 babies are born a day with CHD. By the time you end your day today, 9 of those families will be planning a funeral and crying with empty arms. Don't think it can't or won't happen. I'm still crying.

One Face of CHD

2011-02-03T04:07:00.001-05:00

Make an on-line slide show at www.OneTrueMedia.com

"Born With A Broken Heart "

2011-01-18T03:46:00.002-05:00

I can't remember how I "met" Annette. I know our paths were bound to cross, though. We have too much in common. We are both moms to CHD angels in Heaven. Her son, Alex, died at age 2 in 2007. Annette and her husband Rick wanted a way to share their story with the world and to help educate others about heart defects. They wrote a book about their son called "Born With A Broken Heart". Its an extremely touching story and is beautifully illustrated.

In the process of writing the book, Annette asked me (and other parents) if she could include Tommy's story in a special section of the book. I agreed without a second thought and got down to condensing his story for the book. It seemed like forever ago that I emailed her what I had written. Last year, the book was updated and new illustrations were added. I can't tell you how gorgeous the illustrations turned out!!

All proceeds from the sale of the book go to Alex's Heart Fund at Cedars-Sinai Medical Center.

The book can be purchased several places, including Amazon and on their website, here. I feel very blessed to have Tommy's story published and being read by so many people. Annette has helped me to heal by putting my words about my son into print, along with her own precious angel. Thank you, Annette and Rick, from the bottom of my heart!

I'm Tired

2011-01-05T15:23:00.000-05:00

It's that time again. I'm starting to hear that the CHD community is gearing up for Awareness Week. I used to love Awareness Week. This year, not so much. I'm tired. Weary. I just don't feel like participating. I know this may offend many heart moms out there that tirelessly campaign for more funding for research, more awareness about what a CHD is and saving lives. I greatly appreciate those of you that continue this endless fight. I'm wrung out. I've tasted the bitterness of watching my child die and repeatedly watched this past year as other families I've grown to love have tasted too.

I'm tired of reliving the pain over and over again every time I try to raise a little awareness. I'm tired of telling Tommy's story and seeing the look of horror on people's faces as they try to come up with some phrase, something clever to change the subject. They tell me they're sooo, sooo sorry, that they just can't imagine my pain. They wonder out loud how I get up each day. Tsk, tsk, tsk. Then they give their little heart sticker to their 3 year old to eat and go about their day. When they leave, they forget all about me and I'm struggling to psych myself up to tell the next person the same heart wrenching story again.

I CAN'T. I want to be NORMAL. I am sick and tired of pity. I know I could not comprehend the loss of a child until I had one that could die any day and when he did, I realized I never understood completely. I see that a typical person would not comprehend either. Or they're the type to one-up me with so and so's kid was sick, died, had a murmur, related to someone with _______.

On the other hand, I will NEVER be normal. I will always be the mom of a medically fragile son with multiple heart defects who died suddenly while I watched him take his last breath. I'm shattered, fractured, put back together with pieces missing. I suspect deep down inside the reason I dyed my hair pink was to take the focus off my broken heart.

I may change my mind about raising awareness. I doubt it. I can't bring myself to even consider going to the heart walk this year. It is like being stabbed over and over again every time I see a little one running around, laughing and playing, knowing they survived. I'm happy, THRILLED for them and their family but the pain of missing my own little one laughing and playing hurts more than I can describe. Then there is seeing the ones that are a little sicker, maybe on oxygen or a feeding tube. Reliving the memories. I falter between cherishing and loathing those memories. How can I be thankful for something that hurts me so much and yet at the same time be thankful I have those same memories?

It's been 2 years, 4 months, 2 weeks. I'm not much better today than I was the day I said goodbye to Tommy. In some ways, I'm stronger, in other ways, I'm a wreck. My memory is shot. I forget stuff all the time now. It really stinks to forget to pay a bill, but not be able to forget the last sound my child made. I don't think I am bitter over his death. Just tired of the reminders. Tired of reliving it.

So, for now, I will not be raising any awareness. I applaud those of you that do! You are my heroes. For those of you that are walking the path of having lost your child and STILL raise awareness, I am in awe of you.

Counting Down The Days

2010-12-16T01:11:00.000-05:00

Christmas is almost here. For weeks now, I've been a little "Bah, Humbug" about the whole thing, but I'm starting to warm up.

We're in the same boat as most of the country right now. Flat broke with kids expecting gifts under the tree. I have been so depressed and stressed out. Most days I would just rather skip Christmas all together, but I can't do that to my family. The gifts will be smaller, but with more meaning. They'll come from a place in the heart like they usually do, but when the funds are tighter, even the smallest gift seems like a treasure.

We are so blessed to just have each other. Life keeps hitting us in the gut with everything its got and we still keep standing back up again. We are survivors.

Don't Leave Me

2010-11-30T01:55:00.000-05:00

How long before your memory fades from my mind? How long before you fade from the mind of others? You stay alive in my heart, but what if I start to forget you? Please don't leave me, sweet boy. Let me forever remember the smell of your head and the look of mischief in your eyes when you smiled.

Let me have memories of you laughing and playing. Never let me forget the pain we went through.

So many have gone before, and and so many more have joined you in Heaven. I hate to hear someone else has earned their wings, but it's happening over and over again. It hurts.

I miss you. I love you.

Thankful

2010-11-25T23:52:00.000-05:00

Today was a most thankful day. I'm thankful for being able to watch the Macy's parade with my boys, even if I fell asleep after the 4th balloon. I'm thankful for two families that love me and love my boys with all of their hearts. I'm thankful I have a warm bed to sleep and a roof over my head to keep out the rain.

I'm thankful I can complain my feet hurt after working 10 hour shifts, because I HAVE a job to be thankful for. I'm thankful for my cats and that they are good mousers. That's really important when living in the sticks.

I'm thankful for friends that don't care if the house is a little messy or if I don't have anything to offer them out of the fridge. I'm thankful to have Internet access to be able to keep up with the friends I can't be with. I'm thankful for loud music that keeps me motivated to work.

I'm thankful for my kids. My beautiful, beautiful kids. I'm thankful for their fathers that gave them to me. I'm thankful for my health and the health of the ones I love.

I'm thankful for justice for those that truly deserve it. I'm thankful for peace for those that deserve it even more.

I'm thankful I am loved. Thankful I am blessed.

Life Update...And Being Thankful

2010-11-04T08:42:00.000-04:00

Life has been life lately, I guess. We all have our own issues that we deal with. Halloween was celebrated a day late for us because of my work schedule and because the day before I attended a beautiful wedding and our entire family was just exhausted. So on Monday night, we carved pumpkins with grandma and had a few pieces of candy. I've promised them each their own bag when I go grocery shopping and can buy it on clearance.

I spend most of my days the same. I get up at 7 and put the boys on the bus and then for about an hour or two I have some quiet time with my cats. I catch up on my email, blog, maybe watch an episode of "Glee". Around 9 I head to bed and sleep until around 3. The boys get home at 4, then I'm off to work. It's about a 30 minute drive. They hang out with dad for the evening while I work, then sometime around midnight, I'm back on the road for home, getting home close to 1 in the morning. I pour the kids in bed and start a load of laundry. While it's washing, I cook dinner and watch something on Netflix while I update Facebook. Around 3, I toss the clothes in the dryer on my way to bed. Three hours later, I'm back up again to put the kids on the bus and start over. It's a ridiculous schedule, but we do what we gotta do.

The holidays are coming up. Its a weird time for me. Growing up, Thanksgiving was all about the parade, having family over, and eating for days. When I became an adult, it stayed pretty much the same until Tommy was born. The next two Thanksgivings would both be in the hospital. The first one recovering from open heart surgery and complications, the second one while he battled the flu for two weeks. The next year my life would be upside down. I was back in KY with my family, but without my baby boy. I had so much to be thankful for, and yet, so much reason not to care. I went through the motions, but it stung watching the country "be thankful" when all I wanted was to hold my baby, even if it meant in a hospital.

Last year was a little better. I missed the parade for the first time since I can't remember. I guess my priorities have changed. I shed the old me and was reborn. This has been a year of self discovery for me. I'm learning to be thankful again. Mostly, I've been learning to be myself.

A few months ago, I started wearing tee shirts with silly sayings on them when I went to work. People love to come in and see what shirt I will be wearing that day. I also have pink streaks in my hair. They're growing out, so I plan to redo them in the near future. I do these things because life is too short not to enjoy every moment. Every emotion I have now seems intensified. I laugh louder, cry bigger tears, fight harder, love stronger. The way I live my life is a tribute to my son. If he could spend his entire life celebrating the JOY, then so can I.

If I am thankful for anything, I am thankful for his life. Thankful I was (and will always be) his mom. Thankful for the joy, the love, the tears and the strength he brought to my life in his short time with me on this Earth. Thankful he taught me to be who I am and to live life with no regrets, just lessons learned. To know that tears are cleansing, and that he's always with me. Thankful for the perfect love a little boy named Tommy taught me and the rest of the world.

Looking Back

2010-10-20T18:53:00.000-04:00

I have two medium sized plastic totes in my shed. They're full of Tommy's things. Mostly toys. Today I decided on a whim to go out there and open them.

As I dug through the toys, wondering who would enjoy them, I felt myself get very possessive. I didn't want anyone touching my baby's things. Those were his memories all over those toys. His drool and trach secretion stains. The only thing I thought I might be able to part with were his blankets. I'm thinking of taking them out and donating them. I'm not sure when yet.

I found the shirt I was wearing when I last held him alive. And gone. I wore it for 3 days after that, not wanting to change out of the clothes that last touched him. I have never washed it. I smooshed it back down into the bottom of the tote.

I found nursing notes, paperwork, and books. I took those out to read. I have his hospital records for the first month of his life, up until the day before his first heart surgery. We got them for his SSI appointment when we first applied and they gave us a copy. I learned some new things. I have read them before as a new heart mom, but now that I'm a little more seasoned, things made more sense. I have the reports from his birth and his very first echo. Very cool to read. Never could remember how long he was. 42 cm. That's just 16 1/2 inches.

I learned that his APGAR was a 9 and 9, but only because he wasn't pink. I learned he was born with SATS of only 68%, but within 30 minutes, he was up to 80%. I learned what the doctors found on their first echo, including the fact he had a PFO. I never knew that. I guess in the grand scheme of things, another hole in his heart wasn't that big of an issue when he only had technically one ventricle anyway.

I also found a lot missing. Most of the paperwork only shows his heart diagnosis and his cricopharyngeal dysfunction diagnosis. No notes about the time he stopped breathing in the NNICU while I watched a crowd swarm in to save him. Nothing about his frequent desats when we tried car seat tests. No nursing notes from the Special Care nursery about his day to day life. I wish I had those.

The only thing I found ironic was in the notes from his birth, it says he had a vigorous cry. I will never forget that sound. I would never hear him cry like that again. Sure he would whimper and laugh with his PMV, but never again would he cry and cry big lusty, lung filling cries. Mostly because he didn't need to. He wasn't unhappy. I guess people would say I am lucky to have brought home a baby that automatically slept through the night and never cried or fussed. But at what cost? He was fed by a pump, breathed with a trach, and monitored 24/7. He was never a typical baby. For that I will always mourn.

I don't know what I will do with his things in the shed. Call me selfish, but I don't think anyone else in the world is deserving enough to touch my son's toys. Maybe someday I will have grand kids and will think differently, but for now, they're safe and sound.

A box of memories that are mine and mine alone.

Growing up the oldest of 6 kids I never had much that was mine alone. I don't think I like it very much.

Beautiful, Beautiful Dream

2010-09-25T15:22:00.000-04:00

Today is Tommy's birthday. He would have been 4 years old. I can't believe it. I have a 4 year old. Last night, I had a wonderful dream. I haven't had a dream about him in several months and I have missed him.

In the dream, I was in a school/hospital. (It was a dream...I kept going back and forth) Somehow, I ended up seeing an old teacher of mine and she was telling me that she had gotten pictures of Tommy that someone at the hospital had taken and given to her. Would I like them? I was overwhelmed! Pictures of Tommy that I'd never seen! It gave me the idea to head to the hospital and see what I could find.

I ended up sitting in a room with opaque windows so I couldn't see the patients, but I knew the room was a very small ICU with babies recovering from heart surgery. I didn't know any of the nurses that were coming and going, but I finally got up my nerve to tell them that my sweet boy had been their patient. They remembered his name and gave me more pictures that they had.

After I left, I went to sit in chair in a waiting area to gather my thoughts. I looked beside me and Tommy was reaching up for me. I scooped up my little guy and got the sweetest hugs ever. I woke up remembering carrying him.

Big Ernie

2010-09-24T02:41:00.000-04:00

My second daddy died today. We called him Big Ernie. I met him when I was in Jr. High. He was my best friend's dad. I think I was at their house more than my own at times. I grew up with his sarcasm, his tough outer exterior and softy interior. He cussed in front of me and watched tv shows like "Silk Stalkings". Complete opposite of my own dad.

He's had a bad heart since I met him. He lost a ton of weight in the first year he was a part of my life. "Mama" made sure he ate right. I don't know how many times he salivated over our food as she served him his portion and he said "that's IT?". He would shrug his shoulders and dig in. He worked hard for his family and retired a few years ago from Civil Service.

He was hard on us when we screwed up. He had THE LOOK. Many have imitated, but no one NO ONE will ever do it the way he did. All he had to do was look over the rim of his glasses and hold up his finger. He never had to say a word. We froze in fear as kids (and as adults a few times too) and so did all of our kids when they went to visit Papa.

We called him "Old Man" as a joke. He was far from old, and always young at heart. He wore his hair long and gray. Longer than mine. He appreciated a good joke, the dirtier the better and told them often. As an older teen, he was my go-to guy for a good joke. He read Playboy. He loved a beautiful firearm and was an NRA instructor.

He was fair. Family arguments were met with him throwing up his hands in the air and the call of "I'm going to bed", and when we stayed up to late, he came down the hall and told us it was time to "pack it in".

I miss him. So many memories of a man that has been a part of my life constantly for the past 25 years.

Rest in peace, Ernie. I love you and you'll always be in my heart.

I Saw An Angel Today

2010-09-23T01:00:00.000-04:00

Today, I was walking around a second hand store, browsing while waiting for Brandon to finish a class with 4H. I heard a song and wanted to walk away, but the person I was with asked me to follow them. This was the song playing. It's one of two songs that will bring tears to my eyes and bring Tommy to my thoughts. As I stood there, holding back my tears, I looked up and saw right in front of me a picture of Nemo on a child's place mat. It couldn't be! As the song ended, we continued walking around. My friend noticed a KISS 45. It was "I Was Made For Loving You" and written on the cover was my name. Weird. As we rounded the corner, I was thinking of how to tell my friend about all of these coincidences when a statue caught my eye. It was a fairy. Anyone that knows me knows I LOVE fairies. I picked it up to get a closer look. It had one of those brass nameplates on the front.

It said "Heaven Sent".

That was too much! I could feel the love around me. I've not been having the best of days lately. I needed to "hear" from my sweet boy. Saturday is his birthday. He would have been 4. I've tried not to dwell on him and his memory so much for the past couple of weeks. Remembering him on his Angelversary was just a month ago. I guess there's good and bad that the dates are so close together, but once I've gotten past them and my mind settles down from dealing with the pain, I start gearing myself up for CHD Awareness. I don't know how much I can do this coming year.

I've really pulled away from keeping up with CHD families. Or should I say, following updates. It's all so much. The pain, the doctors appointments, the surgeries, the recovery. Death. The memories never go away. I don't want to say that I'm ignoring Tommy's memory, but I'm trying to dwell less on him in my mind. The love is always there, the fond memories are there. I just can't keep watching him die over and over in my head, and every time I read a new update, I want to cry.

Don't get me wrong, I love CHD and special needs families and I try to say a little prayer for them when I learn that they need it. I just don't think I have it in me right now to be as vocal and active as I have been in the CHD community. I need to recharge my batteries. I think today was Tommy's way of letting me know he's always with me and that it's okay to feel like I need a break.

I'm not abandoning my blog. It just might be a little while before I update. Be patient. I'm still here!

Praying?

2010-08-30T01:21:00.000-04:00

I'm still trying to come to terms with how I feel about God. I don't mean to be disrespectful or bash a religion. These are MY personal beliefs. Before Tommy, I prayed, even went to church when I could. After he was born, it became difficult to pray.

I felt like anything I prayed for would question or disrespect God. How could I ask for Tommy to be made whole when God had made him this way? How could I pray for healing when I knew it wouldn't happen? Tommy would never wake up one day without heart defects just because I prayed. Would he?

If Tommy went into surgery, I didn't know what to pray for. Asking God to keep him safe was like saying He wouldn't keep him safe if I hadn't asked. Then again, what if it was God's will to take Tommy? It wasn't my choice. He wasn't mine, I just had the honor of being his Earthly mother.

I still question my relationship with God. I believe in Him. I know I am loved and one day I will go to Heaven and be with my sweet Tommy again. I guess it's not God I have an issue with, it's Prayer. How do you ask God, all knowing, omnipotent God for something? How could I ask for something so selfish as keeping Tommy here on Earth with me, no matter how much it hurts me? How do I ask for Him to comfort me when I know Tommy is in Heaven, so why do I still grieve him?

I feel like I am a child and I don't have the right to ask for anything. I was told yesterday when I was having financial problems to go to church and talk to God. All I could think was "God won't pay my bills, that's why I'm well enough to work." How do I ask the God that took my son from me for money? I know... He didn't take him.... I have a love/hate relationship with that thought.

I tell myself over and over that it was God's will, that God is never wrong...but I find myself thinking things like "Why should I ask God for anything when he took the one thing from me that meant everything?" or "God didn't save my son, so why should I have any faith that He is going to provide me with anything?"

I'm thinking I have more issues than I thought I did when I started writing this.

The Invisible Scars

2010-08-20T11:37:00.000-04:00

The day I dread more than any other day is here. I've been up since 7 and I've found tears in my eyes about 3 times. It's not going to be an easy day.

Last night, I contemplated what I wanted to write about today. It didn't take long to know what I wanted to share. I realized last night that I have a scar, except it can't be seen. I've heard people say that scars have a story, or scars are the road map that shows where you've been, but since my scar can't be seen, I have to tell you about it.

My scar sits in the middle of my chest, right above my heart. Or at least where my heart used to be. My heart was violently ripped from my body and given to my son when he died. He took it to Heaven with him. In its place, I was given a broken heart to use until I can meet him in Heaven and he can return my heart to me. I know he has my heart because I can feel him holding it. Every now and then, I feel flutters as he gives it a hug and thinks of me.

I wish my scar would show up on my skin so people could see that I've been cut open. How are they supposed to know how much I hurt if they can't see the scar? How are they supposed to know that something so precious was taken from me? Something I love so much and can't live without? How are people supposed to comfort my pain when only I know that I hurt?

It hurts every day, but today, it hurts worse. Like a birthday, anniversary or holiday, we remember important days. They are milestones on our journey. This day is an Angelversary. The day my son died.

Died.

Gone.

My arms used to ache to hold him. Now, my heart hurts as I try to remember the smell of his head, the sound of his gurgley giggles, and the way he breathed when he slept. I can spend hours staring out the window at nothing just thinking about him. When I go to sleep at night, I don't dream about him anymore. That hurts. I can go for weeks without crying. Not months. Just weeks.

I'm keeping myself busy. I'm living life to the fullest. But like a cup that has a leak, no matter how much you fill it up, eventually it's going to be empty whether you like it or not. Since getting a new cup isn't an option and this is the one I'm stuck with, I can try to patch it up and pray it holds or I can just keep trying to fill it faster than it empties. My broken heart leaks. It leaks pain, it leaks tears and sorrow. Patch with a joke. Patch with a happy moment... Patch all you like, the scar is still there.

Whether you can see it or not.

My Birthday

2010-08-18T17:13:00.000-04:00

For an entire year, I hated August 17th. In 2008, I had my birthday sitting in a hospital room, crying because my son was sick and nobody could tell me why. No cake, no love, just me in a hospital room feeling sorry for myself and pissed off at the world. In three days, my son would be dead and I would hate the world even more than I did that day. I swore I would never celebrate my birthday again.

Last year, I chose to work on my birthday. I got a few birthday wishes, but ended up eating cupcakes at midnight because I was so depressed over my birthday and the impending anniversary of my son's death. I waited all day for my hubby to tell me happy birthday and do something nice for me. He forgot. Really. Bad. Day.

This year turned out to be quite the opposite. My boss told me to take the day off, and then while I was at work Monday night, he called to say Happy Birthday because he wanted to be the first. He doesn't know about the rough time I had last year, so for my birthday to start in such a caring way brought me to tears. I went to the cooler (no cameras) and bawled like a baby. I was an emotional wreck for the rest of the evening, but when I woke up on the day of my birthday, I felt wonderful.

I went out with hubby, who not only remembered to tell me happy birthday, but also took me out to lunch! We came home and worked on rearranging furniture in two different spaces. One for him, one for me. He now has a "man cave" and I have a living room again! He can play his xbox on the big screen in the dark and I can open the shades and let the sun stream in while I listen to my iPod on the awesome house system he hooked up for me. The living room still needs work. I need to paint one wall and find a way to hide all of the power cords dangling from everywhere, but I have room to exercise now and I know where all of MY things are located!

After working hard on the living room, I made a steak dinner for hubby and me (the kids were content with corndogs and mashed potatoes). After the kids went to bed, I attempted to dye my hair with pink highlights. It's not as dramatic as I had hoped. I have pink roots and a little pink on the underside of my hair. I color treat it black, and the kit I used was for black hair, just not color treated black hair. I'm going to have to do a whole bleaching and coloring process. Not sure I'm up to doing it myself the next time around.

Finally, after I cleaned up the pink that was everywhere but in my hair, I treated myself to chocolate cake, and through it all, I kept getting Facebook updates of another and another and another birthday wish. I lost count, but I did take a nap early in the afternoon and woke up to 54 text alerts from Facebook.. and that was only at 2 pm. I got constant updates until well after midnight. I can safely say this was the the best birthday that I can remember.

In three more days, it will still be Tommy's Angelversary. I'm okay with that. I will get sad again as it approaches. How could I not? But I'm at least able to celebrate myself a little and know my son would approve of my happiness.

It Creeps Up On You

2010-08-16T08:39:00.000-04:00

Standing in the cooler at work last night, I felt the rush of a memory. Maybe it was a sound, but I could feel the hospital. Earlier that day, as I waited on a customer, something in the air smelled JUST like Tommy for just a second. When we are low on fuel, an alarm sounds in the back room. It sounds exactly like the telemetry monitors. It seems like I can't get away from it. I'm constantly bombarded with sights, sounds and smells that trigger memories.

There are times when I look at pictures or watch videos. Maybe I clutch one of his blankets or an outfit and try to remember. Those are the times when he feels the most far away from me. The harder I try to remember what he smelled like or what his voice sounded like, the more distant the memories become. I have to concentrate on the picture for a second to recall the feelings.

The very same day, I can go outside and see a butterfly or a flower and without even trying, I can FEEL him all around me. I can't look into a small child's eyes without wondering first of all if he "knows" me because Tommy told him about me and secondly I wonder when Tommy would have walked and how tall he would be now. I miss that smile.

I'm torn between letting go and just letting the memories happen and holding onto them tightly so I never forget.

I think what I miss the most is how he smelled. My favorite thing in the world was the way the top of his head smelled. I have read that parents bond with their children by smell, specifically, the top of the head. I have the hospital gown he was wearing when he died, but it stopped smelling like him a long time ago despite putting it in a ziplock bag. While he was in the hospital, I kept myself busy doing laundry. I never knew he would never come home again and that I was washing away all of his precious smell. Every stitch he owned and every sheet and blanket were washed and put away, waiting for his return that never happened. I even washed Wub the night before he died because it was looking so cruddy. Regrets.

I never knew memories would be such a challenge to hold on to.

This Sums It All Up

2010-08-15T03:20:00.000-04:00

July is when he was taken from my home. August is when he died. September would have been his birthday.

Wake Me Up When September Ends....

Home

2010-08-13T08:05:00.000-04:00

I'm asked constantly why I don't move closer to work. It's complicated, but it comes down to my kids. They've been through enough. Having a stable home is important. So is going to the same school for more than a year in a row. Jobs can come and go. My home is my home. Tommy is buried nearby. It's peaceful.

Right before Tommy was scheduled for his first heart cath for what we thought would prepare us for his Glenn, we jumped many hurdles to bring him to Kentucky to meet our families for the first time. While we were here, Rob and I took a walk around his grandparent's property. Looking at the beauty and isolation, I was smitten. I felt at home even though I had never lived here. As I looked around at how far we were from just a grocery store, I realized that if there were ever an emergency with Tommy, we could never get him to a hospital in time. My dream of living out in the country drifted away. As long as Tommy had medical issues, we had to live close to a facility that could treat him quickly.

When Tommy passed away, again, I found myself standing on his grandparent's property. I was filled with such peace. The beauty all around me reminded me of Tommy. Every time the breeze touched my cheek, I felt his kiss. It was quiet, open, serene. Everything my life had not been up until that point.

Then we walked into the trailer that would become our home. Although a bit smaller, it was nearly identical to the one where we lived in Charleston. It was calming and haunting all at the same time. I can't explain it. Living here makes me feel wrapped in Tommy's love. I often visualize him running through the fields, laughing and playing without a care in the world. I think he picked this place for me to live so that I could heal after he died. I never want to leave.

Every day, I wake up and take the kids to the bus. When I turn around and start to walk home, every single day, it still takes my breath away. My lungs fill with the country air, the wet grass sticking to my feet. The sound of the cows next door and across the street. The sun streaming over the trees. If I could see Heaven, I'm sure it looks exactly like this.

Celebrating the Moment

2010-08-09T01:23:00.000-04:00

I still find it strange how some things change over the course of a year while others stay the same. This time last year, I was sick with anticipation about how I would feel on Tommy's angelversary. This year is so different. I have so many wonderful things planned for that week. I feel my life-force returning to me. Yes, I still miss him. Yes, I still cry for him and dream about him at night. Some days I feel like I'm just ready to get off this ride. That part will never go away, but the part that lets me be happy has slowly returned.

Tommy's life was a study in celebrating the moment. Every little thing was new, exciting and sometimes scary. We had very low times, but the good times were amazing. Little things like trying to catch a bubble, laughing at his brother, or chewing on his oxygen tubing on purpose just to see that look on my face. He was all boy.

After he was gone, life took on a new meaning for me. Nothing mattered anymore. The long term was gone and only the moment mattered. I'm slowly letting myself see that there are things to look forward to in my future, but for the most part, I am happy with living moment to moment.

I love to wake up and hear a thunderstorm. I love to smell the honeysuckle in my yard. I never plan menus. I cook what I'm in the mood for at the time. Life is FULL of wonderful moments! Never forget that each moment is precious. Make every hug count. Never be afraid to say how you really feel. Don't be afraid to show emotions that the rest of the world might frown upon.

The next two weeks is going to chock-full of MOMENTS as we lead up to Tommy's Angelversary. I'm going to celebrate my birthday..I'm going to go see (hopefully) Joan Jett at the State Fair. I'm going to put pink highlights in my hair. I'm going to take the time off from work to be with family and friends to watch Kenny Wallace race his car in Bristol, TN with my sweet baby's name on the hood (along with many others). I'm going to blow lots and lots of bubbles and I'm probably going to cry.

I will hug my kids a million times. I will pet my cats. I will dream. Moments, moments, moments. Cherish every single one.

Everyone Needs

2010-07-28T20:29:00.000-04:00

A really good tantrum every now and then! Let it out! Throw something. SCREAM!!!!!

As mom to an angel, I get plenty of opportunity for the world to get me down and I start to feel sorry for myself. Some days it can be over the way my hair looks in the mirror. Other days the rain reminds me of Tommy signing "Itsy Bitsy Spider". It could be my husband said the wrong thing to me. I'm a woman on the edge of sanity most days. One good shove and off I go! (My husband really doesn't like this aspect of my personality. Wonder why?)

Today was a temper tantrum kind of day for me. Not sure what sets me off. Lack of sleep. Memories. Hunger. Maybe plain old moodiness. When I get this way, I really don't care what I say or how I say it. I'm out for blood. Good thing today I decided to keep my thoughts to myself and not take them out on any unsuspecting customers. I had a raging temper tantrum brewing inside me and took it out by texting mean, snotty things instead. Not the best of ideas, but I got a lot of anger off of my chest.

And then it was gone. POOF! Like a calm washing over me.

Some tantrums have better outcome than others. Today had a good outcome. Sometimes I just want to curl up in a ball and weep. Every single one of those days Tommy is not far from my thoughts. I know a screaming, throwing things, breaking stuff tantrum will never bring him back, but it's a whole lot cheaper than putting myself in the hospital having a panic attack. I've been known to purposely stock the cooler at work just so I can kick the empty boxes as hard as I can outside. Some days, I just scream for no reason and I feel great!!!

A little pity party is good for the soul every now and then. Give yourself permission to have a bad day. Throw pillows. Punch the couch. SCREAM UNTIL YOUR HEAD FEELS LIKE IT WILL POP OFF!!!!

Then sit back and feel the calm wash over you.

Namesake

2010-07-25T05:38:00.000-04:00

I've got to get something off my chest. It hurts me so much and I don't know how to deal with it. When I was a Sophomore in high school, I met a boy named Thomas. That is his real name, but we didn't call him by that. That's all the information I'm willing to give about him (for his privacy). We had so much fun together. There was never anything romantic between us. He was my bud. Once, I spent the night at his house and we made crank phone calls. I slept in his sister's room. We watched "West Side Story". I loved him like my own flesh and blood.

He came to my wedding when we were just 18. He was there for me.

Soon after, he went into the Navy and through his travels, we lost touch. I frequently sent letters to his parents to forward to him, but eventually they moved away and I lost all contact with my friend. For years and years, I searched. This was before the internet was popular and accessible. My heart was broken.

Years passed me by, Thomas always in my heart. We moved to Charleston and soon after began my search again. Charleston used to have a Navy base, so I was hoping there was a clue there to lead me to him, but that wasn't meant to be. As the internet became more accessible, I did more digging. I joined Classmates.com, but he wasn't there. He was gone.

Several months after joining, I saw his name. I cried and payed for the full membership to have the ability to leave him an email. I left my phone number and said a prayer. Less than a week later, my phone rang. It had been about 7 years since I had last talked to Thomas. We talked all night, and many more times. We shared our stories about our spouses, our kids, our lives. Eventually, he would come to see me! Time had changed us, but he was still Thomas.

I would find out about a year later I was pregnant with a very special little boy. Rob and I chose the name Thomas, after my friend, Lee for Rob's middle name and decided to call him Tommy Lee after the drummer in Motley Crue. If it hadn't been for Thomas, Tommy would never had been Tommy.

Eventually, the Navy would take him around the world again and eventually the calls and emails stopped. The last time we had contact was around the time Tommy died. I've been able to track down where he is living and I've sent him several messages. All unanswered. I don't know why.

Had we grown apart? Did I offend him by naming my son after him? Is Tommy's death too much for him to face? Or is is something I will never know. It's so hard.

Thomas, if you ever get a chance to read this, I love you. You were one of the best friends I ever had in my entire life. I miss you. I hope someday we can pick up where we left off. I hope your life is well. I've seen the parts you've played in reviews. I wish I could watch in person. I bet you're still amazing on that stage.

Has it Been THAT Long?

2010-07-14T01:32:00.000-04:00

It's July. In 2006, this very month, we would learn about Tommy's heart. That was 4 years ago. FOUR YEARS. Where does the time go? So many things happening at once right now. I have to let go of some of the terrible things, like remembering the day DSS took my kids away on bullsh!t charges (that were dropped), but which Tommy never came home from. I HAVE to let that go. I've marked it on my calendar that Friday marks the day that Tommy has spent more time in Heaven than on Earth, but that is something that I will only remember in my heart for one day. It's not an anniversary, just a very special day I want to mark one time.

But this. This deserves a moment.

I will never forget sitting in the room after having two Level 2 ultrasounds back to back, then a fetal echo. It had been a day of discomfort and unexpected news. The day started out as a way to discover why I had been mysteriously bleeding and turned into a nightmare. My little boy.. and we would discover, for sure, he was a little boy that day, not only had a single vessel umbilical cord, but was missing part of his heart.

His diagnosis would be Double Inlet Left Ventricle. You can see from the illustration that all of the blood in his body would mix together, some with oxygen, some without, like a giant soup, then be recirculated again and again.

I was on bed rest anyway, so I had nothing better to do that start looking it up on the internet. I found very little about the diagnosis. Four years later, its still hard to find information. I was ready to tackle this thing head on. But then, Tommy had other ideas. Like having his birthday 7 weeks early. He never did what he was supposed to do. Silly boy.

In the hospital, we were not encouraged to talk to the other parents at bedside. HIPPA laws and all that mess. I never saw them in the waiting room, because we spent as much time as we could next to our kids. I felt all alone in the world. I really did. I asked if there was a support group and was told that there used to be, but so many parents were from out of town that they just met up at the RMH and kind of supported each other there. Tommy was the only baby there with this magnificent hospital right in his back yard. The rest of the kids came from all over the state, then left when they were discharged.

Some of the heart parents I met online still didn't have much in common with us. They needed one surgery and were done. Tommy was a preemie with a weird heart defect nobody I talked to heard of and a trach and gtube. Very discouraging.

While he was in PCICU, we lost nearly everything. We were facing eviction because I forgot to tell our property manager that he'd been born, much less what all was wrong with him. Then I forgot to pay the lot rent. When I got the notice, I was in the middle of calling her a heartless b!tch when I realized she didn't even know what we had been through as a family. That was a rough day. I soon realized we needed help financially and talked to the social workers at the hospital. We both started making phone calls, but were told it was so close to the holidays that everyone was tapped out and there was no help. I eventually came across a group called Spencer's Fund and saw that I needed to join The Congenital Heart Information Network (TCHIN) to get assistance.

I don't even remember about what became of the assistance, because all of a sudden I was connecting with people all over the world with kids just like mine! Around the same time, I found out about Carepages and started a page for Tommy. Can you believe some of you have been on this journey with me for FOUR YEARS now?

Through our struggles and trials, I have met some of the most amazing, brave kids and their equally amazing parents. I've gotten to know a close few much better and can't imagine my life without them. It's one of the only GOOD things that ever came out of becoming a heart mom. Since Tommy's death, I've gotten to know even more families. I will admit, I do have a tinge of jealousy when one of these kids goes in for heart surgery, but only because Tommy needed surgery so badly, but his lungs prevented it from happening. Those kids are beating the odds. Those kids will have the chance to laugh, run and play and I am so happy for them. They'll forever be "my" kids in my heart.

Four years. I don't think I can look at a 4 year old right now. That's the downside. My baby will be Forever One.

Fitting In

2010-07-08T17:04:00.000-04:00

I'm feeling a little lost these days. I used to be a stay at home mom to a special needs child being kept alive by machines and heart surgeries. Now, I'm the bread winner and my child is gone. When Tommy was alive, my life was a bubble. It had to be for him. I stayed in the same room with him, feet away, constantly watching him and listening to his breathing. I had very few friends, and the ones I had before Tommy was born started to drift away into their own problems and lives, so I turned to the internet.

I joined a few online support groups and forums. My new friends were stay at home moms, homeschooling moms, moms with trached kids, moms with kids with heart defects, blogging moms...you get the idea. I thrived in this online community in the days before Facebook. We posted and emailed several times a day about our kids, supporting each other and offering advice.

Then Tommy died. We moved. I started working outside the home again for the first time in three years. The kids went back to public school.

I'm still struggling to figure out where I fit in. I find myself checking in on the forums less and less. I feel like I have nothing to offer. When I think I have advice to offer to someone about my experience, I feel like they are going to ask me "so how's he doing now?" Umm. He died. Never mind, sorry I bothered you with my advice...ask someone with a living child.

It doesn't matter if it's about our experiences with a trach, tracheal surgeries, feeding trials, speech therapy, heart surgeries, lung issues, sensory issues or any of the other many experiences we went through. I just feel like we've been kicked out of the club. I can no longer post about feeding the bed with the tube feeding the night before. I can no longer talk about waiting for the next heart surgery or how I feel when it's time for a heart cath. There's no need to discuss nursing situations, much less what curriculum I'm going to use for the kids when school starts again.

Don't get me wrong! I still love the friends I have made through all of my experiences and want to keep them a part of my life. I adore Facebook and the ability to stay in touch with everyone I've met. I guess I'm still struggling with finding my place in the world. I've posted about it before. I just don't know my place in the world anymore. I still have a special needs child at home, but his needs are so different from the ones Tommy had. I don't even know if it's correct to call Brandon special needs. He has behavioral issues, but he doesn't require any intervention to keep him alive or improve his quality of life. Medications, yes, and he sees a therapist, but outside of that, he functions just like any other typical kid.

WHO AM I?????

Can I still call myself a heart mom? Can I still say I am the mom to a special needs child, even though he is gone? I feel like I didn't move on from the past, but it let me go. Kicked me out against my will. How do I participate in my own life when I don't know what that life is supposed to be?

Fireworks

2010-07-04T04:12:00.000-04:00

It's funny how a sound can bring memories crashing back to you. The sound of fireworks whistling through the air tonight spun me around, leaving me sad and confused.

Fireworks on the Fourth of July.

In 2007, I watched them from Tommy's hospital room after he had his BT Shunt revision, thankful he was alive because his Glenn could not be done. My tiny little son, not even a year old had just had his second open heart surgery. The fireworks made me feel like we were celebrating our own little independence by making it through surgery even though a week before we were told there was nothing that could be done.

After his shunt revision, we made sure we celebrated everything. Every holiday was marked with fanfare. His birthday was celebrated by so many people near and far. Halloween we dressed him up in a costume too. Christmas was beyond any blessing we could have ever asked for (and still shines in my heart as the most loving thing the world has ever done for us.) He sat on Santa's lap for the first and only time. Easter, he tasted a chocolate bunny for the first time. He hated it, but I couldn't help but laugh at his expressions of distaste.

And that brings us to the Fourth of July, 2008. I could not wait for the sun to go down that day. When it did and I heard the first whistles of the fireworks, I put Tommy and his gear in his stroller and we went walking with Brandon in search of sparkles in the sky. As Brandon and I oohed and ahhed over the fireworks, I realized Tommy wasn't really that impressed. But then I took a look at us.

We were sitting on top of a hill, outside, together. My baby, in a stroller, outside watching fireworks with the family like any other kid. NOT in the hospital like the year before when we thought he would die. Maybe I just realized he wasn't impressed with the fireworks because there was so much to see in the big world of outside. That was one of the best days of my life. The sound of the fireworks whistling and popping made me feel so strong, so hopeful. My son had made it!!

And then, last year. I stepped outside the store to watch the fireworks and as I looked up to watch the shimmers fall to the earth and heard the snaps and whistles, it hit me like a ton of bricks that the year before my life had been so wonderful. I had everything I could have ever wanted. Husband, beautiful kids, a home, income and my very sick son was alive and thriving.

The fireworks turned into a sad reminder of what used to be. I'll never forget sitting on that hill with Brandon and Tommy that night, watching the beauty in the sky and marveling at how far we had come in the year before. From cheating death to celebrating life to feeling empty and mourning my beautiful son.

When you watch the fireworks Sunday night, I hope you remember Tommy and all that he was able to overcome. For just a little while in his life, Freedom did ring.

Medical TV

2010-07-02T01:04:00.000-04:00

I was there again. Back on that couch watching.

Tonight, since I couldn't watch the current episode of Boston Med until it posts online, I decided to watch last week's episode to get myself caught up. Someone was coding. In cardiac arrest. The words flashed on the screen as the doctor said them. "It's been 45 minutes. Call time." Oh, how I hate those words. That was how long CPR was done on Tommy. "Call time" has to be the most terrible words a doctor has to say, not including telling the families.

I don't know why I am drawn to medical programs. They fascinate me. I understand them. Even before Tommy was born, I loved them. You would think after practically living in a hospital that I would detest them, but I find myself drawn to them more now than ever. I guess it makes me feel like I am still a part of that world.

But why? Most of the time on these shows, there is a horrible, traumatic thing happen and then *poof!* Everyone is all better and going home. I guess I live in a fantasy world sometimes. I want the magic powder that makes everyone all better. I want to go back 2 years ago and have them sprinkle it on Tommy instead of saying, "Call Time".

Don't know if I watch to help myself cope, to see a miracle, to find a way to escape for an hour... I don't know. I guess it is the same reason I gravitate towards other families dealing with their own sick kids. I want to see the miracle happen, but can't help to be a little jealous. My husband tells me I need to stop, but I can't help it. There are so many kids out there that NEED one more prayer, one more person to show they care. How can I not? When Tommy was alive, these same people surrounded me with love and showed me tremendous support. Most of them are still here with me on this roller coaster ride now that he's gone.

Maybe I watch them to remind me that my own life is precious. That every life is precious and that there are good people out there trying to make us all well. To someday never have to say the words, "Call Time" because there will be a cure for CHD.

Checking In

2010-07-01T02:33:00.000-04:00

I'm so tired this week. My life reeks of stress. I found some time for me today, but even so, I still have a headache.

I'm trying to get my house cleaned one room at a time. So far, so good until today when I lost all of my mojo. I'm trying to get to bed "early" so that I can get a good night's sleep and start fresh tomorrow. We will see how that goes.

I haven't had much internet access lately. All of the times I've wanted to blog or all of the things that have crossed my mind have not coincided with the times I do have internet. It's been very frustrating. I hope that changes soon.

Not many changes going on in my life. Really, it's all drudgery. I can't really go into the stress parts, but I'm hoping it all works itself out and I don't have to deal with it anymore.

Well, I'm off to bed... at 2:30 in the morning. See? Early! For weeks now, it's been 4.

Deja Vu

2010-06-24T23:23:00.000-04:00

Discombobulated.

That's how I feel today.

Yesterday, I was cleaning house and was vacuuming the hallway. Let me explain that the mobile home we live in now is set up nearly identical to the one we lived in while in Charleston. This one is smaller and has a couple different features, but walking in the front door feels exactly the same. I don't know if this helps me or makes me feel worse some days.

As I was vacuuming, I was walking backwards and stepped around the oxygen concentrator.

Except, it wasn't there.

I do this a lot. My head swims for a second as I look for things that should be there that aren't. I've lived here for almost two years now. I should know where I am, right? The carpet and walls are different colors. What would have been Tommy's old room is now the boy's room. It looks nothing like Charleston in there, and yet, I find myself not able to comfortably walk in. It's like walking around in a dream state, except I'm awake and I can't find myself.

Its not exactly depressing moments when these things happen. More of a deja vu kind of moment. For a second I was back there again, trying to clean around that noisy concentrator. It was a pain to have medical equipment in my house. It was loud, cumbersome, and a constant reminder that my son needed machines to live.

And I miss them.

I cleaned my living room yesterday. It used to be a challenge because I was always trying to figure out where to stash 15 tanks of oxygen. I can see all of my floor. No quilts for Tommy to play with his toys. No toys for that matter. We used to live in a hospital. Now, it's just a house. A house that is too quiet at night.

Because there are no oxygen concentrators running to remind me my son is alive.

Another Countdown

2010-06-17T15:14:00.000-04:00

Not long ago, I posted about the recurring dream I had been having about trying to sort through our things in Charleston. Last week, I got a phone call. Someone I love drove to the place where our old mobile home used to be. It was no longer there. He told me I could stop having my dreams now because there was nothing to go back to and I could be at peace now. What a wonderful, loving thing to do for me!

Since then, my life has been upside down. I've had two dreams of Tommy, but I can't remember them. I remember that they were sad dreams, so it's probably a good thing I can't remember them right now. I have something weighing heavily on my mind that I know is affecting my dreams.

I've reached another milestone. One month left. On July 16th, Tommy will have been gone from this Earth longer than he lived. This is a very sad time for me. It will mean I have lived longer without my sweet boy than time I was able to spend with him. I feel myself slipping farther away from him. I find myself constantly looking at pictures, and reading old stories about him, trying to keep his memory fresh in my mind. I worry that someday I will be the only one who knew him and when I am gone, he will be too.

He was the bravest, toughest, most stubborn, happiest kid I have ever met. He could charm the socks off of any nurse in the hospital and have every doctor he met scratching their head in amazement. Every breath he took and every beat of his heart was a true miracle. I remember hearing doctors tell me that I was doing an amazing job with him. He gained weight, he looked good, I stayed on top of everything, he was doing remarkable, blah, blah, blah... I'm no saint, I was just being a mom. I'm sure subconsciously I was working harder because he did require more than a typical child, but it didn't matter. My child needed me and I was there for him. End of story. Parents tell me they just don't know how I did it, or they could never do all that I did for Tommy. Sure they could, had they been in my shoes.

I would give up every breath in my body to do it all again. Every surgery, every procedure, every medicine, every trip to the ER. Every little thing we did for him gave us another moment of life with Tommy. I cherish the moment he entered this world through my body to the moment he looked at me for the last time and took his last breath and every moment in between. I stare in amazement at a picture of him sleeping on his tummy. It took a year of therapy and hard work to get to that moment, but he did it! Most 18 month old kids are learning to walk, talk and explore. Tommy was learning to sit up all by himself.

I wish I could have seen the day he took a step.

30 more days left. 30 more days until I reach another milestone I never wanted to see. It's just another day, right? Another day just like today that I am aching to hear that laugh and hold him in my arms.

Found Memories

2010-06-11T03:47:00.000-04:00

Tonight, I was cleaning out a suitcase. I stumbled across some really sentimental things. I found the last trach Tommy ever wore. It was the one he took his last breath with.

Medical ID bracelet.

ID bracelet from when he was admitted when he had his tonsillectomy. It says 7/16/2008.

Just a month before he was gone.

Going through baby clothes. Trying to bring myself to find a way to make a quilt out of them. I'm going to work on it with hubby's aunt.

Trying to move through this.

Searching Dreams

2010-06-10T05:11:00.000-04:00

This evening, I fell asleep on the couch. I had a dream that I can't shake. I've had similar dreams in the past, but this time, it was off kilter. It bothered me.

When we left Charleston, we put everything in storage before we moved. There were a few things we decided not to take and a couple things we forgot. Like our kitchen table. It was an antique that I had picked out and bought earlier that year. I just loved it! However, we had just buried our son, lost all of our income and were losing our home. To say my head wasn't screwed on straight is an understatement. We had set several things on top of it that we were going to throw away and somehow, the table just managed to get left behind. We didn't realize it until we were out of the state and there was no going back. It was the only thing we left that I gave a second thought over. There was nothing else sentimental, worth value or just something I wanted to keep.

For the past year, I've been having a recurring dream that we end up in Charleston in the middle of the night and find that our trailer is still there with ALL of our things left inside. We no longer live there and we are not supposed to go inside because it doesn't belong to us anymore, but we break in anyway. I frantically start going through things and we pack up a truck all night long. We take what we can and always have to flee because we are about to get caught.

As the months progress, in my dreams, we've gone back several times. Each time, I'm looking in different rooms and packing different things. Most of the things in the dream I've never even owned in my real life, but in the dream, they're mine and it's important things. Every dream has just been me and Rob, sometimes with sometimes without Matthew and Brandon. It doesn't seem Tommy ever existed. I don't even remember him in my dreams. Like he was never there.

In reality, when we left the house for the last time, we made a point to make sure we took part of Tommy with us. We wrapped up a couple of his favorite toys in one of his blankets and said a prayer. We told Tommy it was time to go with us. Then we put those things in a special box that I carried with me when we traveled, not left in storage. A few months later, my husband went to Charleston without me and brought back our things. Nothing was missing except that silly table.

Tonight when I had my dream, it was the same. We end up in Charleston. Me, Rob, Matthew and Brandon. We set to work packing, but instead of finding all of these things that we've left behind, I walk in to find we've already been there before and that this is a second trip for us. There won't be much we haven't already taken. Instead, I find stacks of newspapers in all of the rooms. Like I've saved several copies of the same paper. I get a feeling in my dream that every paper has an article about Tommy. I dream that he has a scar on the side of his face from some sort of burn, and that the papers talk about him. I feel he is gone and I cannot go back ever again. I leave all of the papers in the house and take a few of my clothes. That's it. There's no truck full of boxes to haul away this time. Just memories. Sad, sad memories.

I have no idea what the dream means. It was upsetting to see the scar on my sweet baby's face and I have no idea why my mind would see that. I woke up very sad and wondering what it all meant. Closure? Healing? I don't know. I can't go back to that house. It doesn't exist anymore. It was a mobile home on a lot that has probably been moved or resold to someone else. I don't know what I'm searching for. I always hoped my dreams would guide me to what I'm looking for in my life, but this time, I have no clue. I'm lost.

NEW BLOGSPOT ADDRESS

2010-06-08T02:12:00.000-04:00

I just changed my blog's web address to http://www.musingsofaheartfamily.blogspot.com/. Sorry for any confusion this may cause anyone. I should have made an announcement first, but didn't realize it wouldn't carry over once I changed it.

Got To Get It Off My Chest

2010-06-02T06:07:00.000-04:00

I was robbed. Cheated. I had a beautiful son and now he's gone. Why didn't anyone listen to me? I was his mother! I knew something was wrong. I've told Tommy's story before, but this particular circumstance will not stop nagging me. Yes, it's haunting to have seen him die in front of me, but worse was sitting in the hospital over a weekend and being ignored.

The doctors rounded and practically patted me on the head telling me all was well. But they weren't his doctors. I guess everyone thought "Hey, it's Tommy. He bounces right back. He's got his own way of doing things, but he's always okay." I kept believing people when I was told he had overworked himself learning to breathe without a trach, that we'd rushed him.

My ears heard this. My head found logic in what I was told, but my heart, my mommy-gut was screaming that something wasn't right. How could a child go from being completely weaned from oxygen and having his trach removed and doing the best he'd ever been health-wise in his life, to a week later, gasping for air, needing oxygen at odd moments and sleeping nonstop for 3 days? He was literally falling asleep sitting up.

I begged for a white blood count, but I was told one had been done when he was admitted Friday night. So what was the harm in doing it again? Oh, it was the weekend. Everything comes to a halt on the weekends in a hospital. Really, it shouldn't. People don't stop being sick because it's a Saturday.

What if they'd taken me seriously that weekend? Instead of waiting until Monday, Tuesday and Wednesday to wonder what was going on and do this little test and that little test. They would have discovered what we had to learn in an autopsy.

My son was in heart failure. He had bronchopneumonia and wasn't being treated for it. Would an echo have mattered? A chest xray? How about a little stick to draw more blood and start antibiotics right away, just in case, on Friday night instead of Monday? Then when his IV blew out on Tuesday, just leaving it out because he was well enough to go home the next day anyway.......

He went "home" alright.

I was so mad and frustrated that weekend. He'd been in the hospital a month and we finally got him home, only to go back 3 days later. The happiest day of that summer and the saddest day of my life were exactly 7 days apart. I didn't take one picture of him those 5 days in the hospital. He was so, so sick and unresponsive. I knew there would be another day for pictures. I just didn't know it would be at his funeral, taking pictures of him for the very last time.

I have no closure. There are days the "what ifs" tear me apart. What if we had been on our regular floor with nurses that knew him well? What if I had taken him in to the ER Thursday night instead of Friday afternoon? What if I had a screaming temper tantrum in his room until security was called and MADE them find out why he was so sick?

I feel like the whole world dropped the ball that weekend. So many missteps. So many things that could have been done differently. I was so sick to my stomach. My mommy-gut knew things weren't right.

I was told he was depressed. They'd send in a Child Life Specialist. This from the cardiologist on call that weekend. I blame her. Never liked her, now I have a reason to despise her. I don't think she "killed" Tommy, but she sure didn't do a whole lot to save his life either.

If one small thing had been changed, would I be awake in the middle of the night because I was filling his feeding pump instead of blogging about how much I need him back? About my broken heart?

It's not healthy for me to keep all of this inside. It has to come out. I have to say how I feel or I carry it with me and eventually, it overcomes me.

The attorney we hired dropped the case after a year. No explanation, just that they were not the ones for the job and I had 3 years to pursue it if I chose. We chose not to explore that option again. There would be nothing to gain and it would not bring him back.

Deep breath.

I miss you, sweet boy. I'm sorry. I wish I had known you were dying. I wish I had taken your picture. Held you one more time. Told you I loved you again and again, even more than I did. I wish I had never washed your Wub. Never washed your clothes. I can't find your smell anymore.

Most of all, I wish you were still here.

Heartbroken All Over Again

2010-05-27T00:09:00.000-04:00

Another baby died of their CHD today. I only learned of her last night and spent about an hour reading her family's blog getting to know her and praying for her. She was 10 months old. Another family gets to plan a funeral. Decide what they want to dress their child in for the very last time. Figure out what to do with her things when they are ready. And grieve. Forever and ever and ever.

I can't get away from the pain. I mean, it's not on the surface anymore. It's no longer a fresh wound, but one that is so deep that just because it looks healed from the outside doesn't mean it ever will be.

Losing a child is like having your heart shattered and no matter how many times you put it back together, you're missing a piece and the sharp pieces prick at the inside of your chest if you move the wrong way that day. Some days, you can walk just the right way and feel no pain, but then you let your guard down and WHAM! There it is. As time goes by, scar tissue keeps your heart mostly intact and keeps you from getting stabbed over and over again, but it's always there. There's always that chance you'll wake up that day and feel yourself hurting all over again.

Its waking up feeling like today is going to be wonderful, but then you hear the rain on the roof, smell something in the breeze, hear a sound and you're pulled back to the memory of the day your world stopped.

Its not wanting to get out of bed some days, but life for everyone else goes on. It's not wanting to celebrate for another person's child when yours has nothing to celebrate ever again. It's anger, resentment and feeling bitter for no reason sometimes. It's nightmares when you only want to dream of holding them again. It's feeling like everyone wants you to get over it and wanting to tell them to take a flying leap. It's passing the cemetery and not wanting to go in, and longing to find some peace all at the same time.

It's looking for signs from above, wondering if the song you hear on the radio was meant JUST for you from your child. It's marking the calendar with how long they've been gone, not how many birthdays they've celebrated. It's seeing kids around your child's age and wondering what your child's life would have been like had he lived.

Tommy has been gone for almost 2 years now. It feels like yesterday. I used to reach out to parents that had lost a child, but now it makes me feel so depressed. Misery loves company, but this misery isn't like losing a ball game or divorce or any other loss, no matter how big or small. It's a black hole of despair that never, ever, ever goes away. I've tried to ignore it, but it's always there. I guess "pain" isn't the right word to describe what I feel. It's more like being covered with a thick fog of sadness. The saddest feeling you've ever had could never touch the sadness a parent that has lost a child feels.

I don't need pity, understanding, a shoulder to cry on, for you to look the other way, or any other way you think you should feel about my sadness. It is what it is. My burden to bear. There is no right way to grieve. I blog. That's me. Another parent might never speak of their child again. That's not wrong either. The only thing I need, what any parent that has lost a child needs is for the floor to stop falling out from under us for no reason.

The Memories of Holding You

2010-05-24T08:23:00.000-04:00

Two pink lines on a pregnancy test. Beaming with excitement and glowing with pride and love at the thought of the child I held inside me. Through the good days, the bad days, the scary days and the ever so sad days when I wondered if I would ever get to hold you on the outside.

Holding you inside of me just one more day, then another, for three whole weeks, trying to grow you just a little bit more when my body failed to protect you.

Finally... when you had been on this earth for two days, I got to hold you in my arms. A pillow to rest my arms upon, layers and layers of blankets and more wires, lines and feeding tubes than I cared to count, all carefully maneuvered so that I could cuddle with you for just a moment. Admiring the tiny scab on your nose from the CPAP machine. Holding you meant you were finally remembering to breathe on your own.

Snuggling you in the special care nursery because you were a NICU graduate. Almost having you home....

Coming to the step-down unit and being able to get you out of your crib all by myself. I'd figured out those wires and lines and could hold you for as long as I liked. And I did. Little did I know it would be awhile before I was able to hold you again.

After your heart surgery, it would be 8 very long weeks before I could hold you again. The day you finally had your pacing wires removed after you got your trach was like a holiday! I couldn't wait to get to the hospital that day. I held you for an hour. My arms ached and hurt so badly, so I did what I had to do. I held you for another hour and thanked God for every second I had with you, forgetting how heavy my arms felt.

After that day, holding you was a challenge. Your little body had become so used to being poked and prodded that being held wasn't fun for you anymore. Most days when I tried, it ended up with you turning blue and me crying. But we rose to the occasion. Hard work from both of us finally paid off.

Easter morning, you were Seven months old. You let me hold you. And for the first time in your life, you fell asleep in my arms. No longer afraid of pain, you found comfort and love in my arms. We had made peace with the terrible, yet necessary infancy you had endured.

From here, the snuggles get blurry. We snuggled on the couch together watching TV. I held you for a second longer than I needed to when I moved you from your swing, your car seat, your stroller, your bed.

You learned to hug me and kiss my cheek. You signed "I love you" to me every single day.

The last two times I held you are burned into my heart forever. They were less than an hour apart. Breathing fast, clutching my neck and sleeping on my shoulder. Your body conformed to my chest. Mother and child, we were one unit as I rocked you and listened to your breath in my ear.

An hour later, I would hold you once more. I held you until my arms ached, then held you for another hour. I could not let you go, but I had to. You were gone. And I knew when I let you go for the last time, I would never hold you in my arms again. I smelled your little baby head for the last time. Kissed your tiny face.

I still feel you in my arms. I hold you in my dreams. I hold your memory with me every day. I carry my love for you in my broken heart. I will never let you go.

I Hate That I Can Relate

2010-05-13T12:11:00.000-04:00

On our porch is an old metal mailbox. I don't know why we kept it. Probably because hubby thought he might be able to recycle the metal and hasn't gotten around to it, but for whatever reason, it sits on our porch. If the front door is open, I can see into the mailbox and about 2 or 3 weeks ago, a couple of house finches moved in and started building a nest. I let the boys know to stay away from it so the birds would stay and we could watch.

On Tuesday, when I came home from work, Rob let me know that the boys were messing around and knocked the mailbox over. They put it back, but it was too late. The baby birds had been jostled out of their nest and were laying inside the opening of the mailbox. Sad. Very sad, but what could we do? The little naked bird wasn't moving. We figured nature would take its course and that was that.

The next morning, yesterday, I had the front door open, watching it rain and listening to the quiet. I looked up to see one of the finches bringing the babies something to eat. It looked in the nest and hopped in and our several times. Confused. Stressed. It began a sad warble. I knew it was mourning the loss of its babies. I nearly burst into tears. I was relating to a bird that had lost its young. It was too much for me to take and I closed the door.

That afternoon, the boys came home from school. It was my night off, so Brandon and I decided to do something fun in the yard. As I walked out of the door, something caught my eye. The baby bird that had been just inside the opening of the mailbox was now laying outside, on the door of the box. Odd... Then I saw something happen. The bird took a breath and moved! No way was I seeing this. It was alive? I yelled for Rob, who put on plastic gloves and gently moved the birds back into the nest. Alive. All of them alive.

My routine was broken this morning, so I was not home to watch for the parents to return. I hope and pray that they do. I hope that in a few weeks, I am seeing little feathery babies fly out of the nest on their own.

I have a recurring dream. That Tommy never died. The doctors tell me it's all a mistake. Take him home. A second chance at his life. I always wake up wanting to fall back asleep for just a few more minutes to hold him again. Seeing that baby bird was like watching my dream. It wasn't dead, just injured, fallen out of its nest and its mother unable to help it. I am practically begging the universe to send the mama bird back to her young. To give them the one thing I can only do in my dreams. Know that my sweet boy is still alive, even if only in my heart.

Bittersweet Mother's Day

2010-05-10T08:17:00.000-04:00

Yesterday I was awakened by my 11 year old bringing me breakfast in bed. He fixed me a bowl of Corn Pops and replaced the milk with Yoohoo. It was actually pretty good, and a feast compared to last year! Last year, I went to the grocery late Saturday night after I got out of work and bought a ton of easy to make breakfast foods. Microwavable croissants with sausage, egg, and cheese, donuts, juice and milk, and a few other things. I was hoping when they woke up and saw the breakfast things, they would bring me a beautiful breakfast in bed. Wrong! They woke up, saw the loot and got down to business, eating every morsel. I woke up on my own several hours later to a rumbling stomach and no Mother's Day breakfast. So for him to at least bring me a bowl of cereal was more than generous and thoughtful this year!

Right after breakfast, I did a quick update of Facebook to see what everyone was up to for the day and discovered on of my best friends had a very sick daughter. Her daughter has a long history of getting very sick very fast. She told her mommy it was time to say goodbye. She's better now, but at the time, I turned to Rob and told her what she had said to her mom. Remembering what we had gone through with Tommy, watching him sick and finally saying goodbye overcame both of us. It's so hard not to miss him on a regular day, but this was Mother's Day. A day to spend with your children and celebrate being a mom.

Tommy wasn't my only child I wasn't able to hug yesterday. My oldest is in another state, adjusting to life there. Of the 4 pieces of my heart, half of them were missing.

I didn't have time to dwell on being sad. I had work. I was hoping to treat it like any other day, but when I took a break, I saw updates on Facebook about their great Mother's Day, and I also saw updates from moms like me who had achy, empty arms. It was a slow day at work, so I did the only thing that would make the day right. I went to the parking lot and blew bubbles for Tommy. I carry them in my purse for occasions like this. Sometimes I start missing him so much I need to send him bubbles to show him how much I still love him.

The rest of the day went by quickly. Soon the rest of May will be gone and school will be out. Both boys have summer birthdays to look forward to. I should be okay on nervous breakdowns until July. On July 17th, Tommy will have been an angel longer than he lived on Earth. Don't know how I feel about that yet. Forget about August and September. I'm just going to crawl under the blankets and come back out in October.

I made sure and hugged my boys a few extra times yesterday and tried my best not to yell. Some days it's hard to be a mom, yelling at the kids to pick up their mess, stop picking on each other, take a bath, stop picking their nose, etc. But you've got to be thankful for those moments. It can be gone in a heartbeat.

I Lied

2010-05-05T16:29:00.000-04:00

I lied to a customer last week. Since then, I realized I've been lying to myself. I work at a gas station about a block behind the hospital. Ambulances fly passed the front of the store with lights and sirens blaring at least once a day. I've learned to ignore it for the most part. He asked me if the ambulances bothered me. I told him they didn't and that I was used it it after a year. As soon as the words left my lips, I knew I had lied.

Since then, I've become more aware of them. I really had blocked them out, but now I can't stop hearing them. The worst is seeing one with just the lights on, no siren. It makes me wonder why it's no longer an emergency. Tommy only ever rode in an ambulance once, for transport, not for an emergency. No sirens or lights.

After spending more time in a hospital than at home for 3 years, you hear the sounds of the hospital all around you. Sirens were part of that life. It reminds me of that part of my life. Part of my life that I miss very much. Most of the time, it was a blessing when Tommy was in the hospital. I'm not saying why he was there was always a good thing, but when it was something planned or routine, I adored spending a day or two alone in his room with him.

When he was in the hospital, he was safe. It meant I could get a break. At home, I was his caregiver 24/7 and could not leave his side for a shower, to put away a load of clothes, a nap. Nothing. In the hospital, he was hooked up to monitors, had nurses steps from him at all times, and doctors on the floor. I was free to go get a meal, go for a walk, and relax for a few minutes. Sometimes I would have Rob drop off Matthew and Brandon and we would hang out in Tommy's room watching movies, having snacks and going to the Atrium to play when it was open.

Sometimes we would go to the roof above Children's ER and look down at the ambulances.

When I hear the sirens now, it reminds me that someone is hurting. And then I realize it's me.

Two Years

2010-05-01T14:52:00.000-04:00

Two years ago, our lives changed. We would find it had been creeping up on us for a long time, but the shock of what happened leaves me grateful every moment that my husband made it through alive.

For several months, Rob had been having strange symptoms, none that seemed related to each other. It started with him gaining weight and despite eating like a bird, the weight kept piling on. He was well over 350 pounds. He had a strange tickling cough that wouldn't go away. His shins began to swell and he developed weeping blisters. He couldn't sleep in bed anymore. He started sleeping upright on the couch because when he laid down he couldn't breathe. He went to his doctor about his legs because we thought it could be an infection. The doctor swabbed for MRSA, then told him "his girth was restricting blood flow to his legs. Lose weight". Then his legs were wrapped with an ace bandage to constrict the swelling and he was sent home.

Life began to get really hard for him. He couldn't walk up a flight of stairs without getting winded. He came home from work every day, sat on the couch and fell asleep. He was exhausted. Tommy was in the hospital around this time having a scheduled surgery to widen his airway. My mother in law was in town to help out with the boys. I remember the three of us arguing because Rob didn't want to visit Tommy. Turns out it was it was because Tommy's room was at the end of a long hall and Rob was having great difficulty walking that far. He eventually went that night and I have some great pictures of him leaning over Tommy's crib.

Tommy was only in the hospital for a few days and came home on Monday morning. That evening, Rob felt ill. He was having a hard time breathing, coughing and felt chest pain. We both felt like maybe he had bronchitis some other lung infection. We discussed him going to our doctor the following morning, but he said he felt sick enough that maybe he should go to the ER. He said he felt well enough to drive himself, but I needed to come with him. He wanted me to do the paperwork and insurance, and I know he wanted me to keep him company.

Once we made it to the hospital, he could only walk a few feet without having to stop to catch his breath. I tried to go get him a wheelchair, but he insisted to just give him a second and he would be okay. He stopped several times to catch his breath. It took us about 15 minutes to get into the door. Once I got him settled into a chair, I went to sign him in. I told the nurse he had shortness of breath and chest pains. They took him straight back. A pulse ox showed his oxygen was low. He was put on the monitors in a room and the doctor ordered an EKG.

Everything started happening very quickly after that. An EKG takes just a few seconds to do and the results are printed right out. The tech turns to the nurse and whispers something that only I heard. "He's in Afib". I knew from having a heart kid that Afib was NOT a good thing. I knew it was an irregular heartbeat, I just didn't know HOW bad. As it turns out, it was very, very bad. The top of Rob's heart was quivering instead of beating. His heart rate was well over 200. Rob's heart was not working properly. The doctor said Rob was not having a heart attack, but that his heart was failing. They had to get the quivering under control right away. They admitted him right away. The heart center was a block away from the ER. They took him by ambulance.

He was given several medications to slow his heart rate and to start pulling fluids from his body. He lost approximately 20 pounds in 5 days just from his body letting go of the fluid. The official diagnosis was congestive heart failure with atrial fibrillation. Now they had to find the cause, and get his symptoms under control. A-fib is very dangerous because the heart is not pumping efficiently and can cause blood clots. He had ultrasounds of pretty much his entire body to look for clots. The first time he fell asleep in the heart center set off alarms. His oxygen was dipping into the 80's when he slept. Putting him on oxygen didn't help. He wasn't breathing when he slept. They brought in a CPAP machine and fitted him with a sleeping mask. It was very tricky and finally we had to start letting him fall asleep wearing the mask and turn on the machine once he was asleep. He didn't get much rest. His medications had him running for the bathroom every hour to let go of more fluids.

After 3 or 4 days of medications to correct his A-fib, the doctors decided to do a trans esophageal echocardiogram, a TEE. Rob would need to swallow a probe so that the doctors could examine his heart from his esophagus. Basically it is an ultrasound done as close to the heart as possible, without all of the tissue, bone and muscle to pass through to get a picture. Rob had to be knocked out so they could get the probe down his throat. Typically the throat is numbed and the patient just swallows the probe while awake, but Rob wasn't able to without gagging.

He came back to his room with large red marks on his chest and back. Medication wasn't able to fix the irregular heartbeat so Rob had to be cardioverted. His heart was stopped and then restarted by shock to put his heart back in normal sinus rhythm. We were told it was a wait and see thing. The longer his heart stayed in normal sinus rhythm, the better chance he had of it staying in normal rhythm and not slipping out again. Praise God, it's been 2 years without another episode of A-fib!

CHF caused us to make some serious changes in our lives. One of those things was diet. Low sodium is necessary to keep fluid from building back up again. CHF is forever. His heart is damaged and there is no going back. It will never pump efficiently on its own again. Medications are necessary to keep his heart working properly. He takes 5 different medications a day to keep him going. The other big change was being told that Rob should no longer work. He needs have the least amount of stress possible in his life and on his heart. No standing for long periods, no sitting for long periods. No extreme temperatures. No stress. No salt. Relax. Walking is good, but take it easy. Basically the only thing he needs to do in life is chill out and take it easy.

Funny how taking it easy makes our lives very, very hard. It leaves it to me to work full time while he watches our kids. That is more stressful than working in my opinion, but there is not a job available he can do that would not tax his heart or his stress levels. We make due with the life we have.

We've learned to slow down and take nothing for granted. Nothing is too hard. Nothing is THAT important. Between losing Tommy and nearly losing Rob, there's nothing we can't face. Our biggest obstacle has been that we are without insurance. Thankfully, his medications are generics and only cost us around $20 a month combined. We also recently found out he can get his blood levels checked for $15. He takes Coumadin, which is a very dangerous anticoagulant. Too much in his system and bumping himself can cause internal bleeding (another reason he shouldn't work). Not enough, he is at high risk for blood clots. He grew a beard because he's afraid to shave. Cuts bleed longer and he doesn't want to risk it.

We've applied for disability, but we've been told he doesn't qualify. We've appealed twice and retained a lawyer. Next step is to take it before a judge, but the docket is full until next spring, so we wait another year without medical care for him. We own a pulse oximeter and check him regularly. He also weighs himself daily and checks for signs of fluid buildup. Our biggest saving grace was his CPAP.

Rob's CHF was caused by severe obstructive sleep apnea. Snoring and not breathing while he slept caused his body to startle itself awake so many times at night that his heart overworked itself. Two things scared us about this whole experience. First was being told in the ER that if we had waited to see his doctor, he wouldn't have made it and probably would have died within 2 days. The other was without using a CPAP machine, he would probably have a heart attack in his sleep and die. That machine literally saves his life.

I don't know what I would do without Rob, but because of the nature of his disease, we face it every day. If he gets winded, feels lightheaded or becomes ill, we panic. A simple lung infection could kill him because his body is not 100%. All of this from snoring.

A Peek at Me

2010-04-28T09:02:00.000-04:00

I'm more than just a mom of special needs kids. More than mom to an angel in heaven. Problem is the "more" part kind of gets lost sometimes. I keep trying to be more of an adult and less of a mom, but mom seems to shine through no matter what. I know I will always be a mom, but I won't be a mom to young kids forever. Someday they will grow up and I want to be able to have an identity outside of just being their mom. So here is a little peek at me. Rene. The person, not the mom everyone knows.

I wear obnoxious and funny tee shirts. I have one that says "The Zombies Are Looking For Brains, Don't Worry, You're Safe", and another that says "You Don't Have to Be Crazy to Work Here, They'll Train You". I wear them both to work on a regular basis.

I am a technology junkie.

My nickname is "Internet Queen" for my keen ability to find obscure things on the internet in a matter of minutes after friends and family have searched for hours. I have internet access 24/7, even on my phone just so I can look things up as they cross my mind, as they often do.

I'm slightly obsessed with my status updates on Facebook. I can use them for good....and for evil.

I'm a tomboy at heart. I rarely wear makeup. Mostly because I'm too lazy to put it on. On the other hand, once warm weather is here, I ditch my shoes for flip flops and paint my toenails. I'm a t shirt and jeans kind of girl. Don't even own a dress, much less heels. Nope, just one pair of tennis shoes for work and more flip flops than one person should be allowed to have. Dressing up can be a challenge. I clean up okay, but actually finding something I own that appears dressy is the problem.

I back talk to my boss. I think he likes it.

I wear my hair in a ponytail with bangs. Mostly because it's stick straight, falling out and so thin, I can't do much else with it. I kept it really short for years, but hubby mentioned he liked it long about a year ago, so I decided to grow it out. I dyed it black on a whim over New Year's and I love it more than anything I've ever tried. Except it's been 8 weeks since my last dye job and I have gold roots. Time to cough up the $5.00 for more dye.

I'm religiously confused. I was raised Fundamental Baptist, joined the Christian church in high school, became a pagan around the time I was 21, and eventually baptized Mormon. I've come to accept there is no set organized religion for me. It doesn't matter what path I walk down as long as it gets me to the same God that I know and love.

I can make sushi.

I love crime drama. Currently, hubby and I are watching the series "Bones" on Netflix. We started with the pilot and are watching them all in order. We cover about 3 shows a night. We did the same with CSI and Law and Order, SVU.

I'm a cat person. I can't stand dogs.

I'm not crafty, but I am creative.

I want to travel. Everywhere. The world fascinates me. My dream is to buy an RV and drive to every obscure town in America. I want to taste the food, hear the accents, see each and every river and stream on the map. I don't know how to drive yet.

I'm 38 and I'm pretty sure when I grow up, I'll still want to be working in a gas station. As a matter of fact, I want to own my own store. I love it!

I'm sarcastic. As a matter of fact, everyone I'm related to biologically is sarcastic as well. I think it's a dominant gene in our family tree. We also love to laugh. I am the oldest of 6 kids and our mom is the ringleader. You never know what's going to come out of any of our mouths at any moment, but once you've gotten over the shock, you're probably laughing right along with us.

I work with my sister. I'm 5 years older, but we look so much alike that customers that have known us for years are shocked to find out that there are actually 2 of us and not just one person working all day long. People pick up conversations with both of us that they were having with the other, only to find out we are not the person they were talking to originally. The best part is when one of us stops by when the other is working and someone realizes there are two of us. Then to find out we are not twins is even funnier. Mostly its a lot of pointing back and forth with a confused look.

So there are a few things about me. I hope you enjoyed getting to know ME a little better as a person and not somebody's mom.

Does Not Play Well With Others

2010-04-25T03:05:00.000-04:00

I need to vent. Really Vent. There are people in my life that don't have any business there. I've tried to like these people, but I can't. Maybe I can smell the B.S. on them. Whatever the reason, I've decided I don't have to like anyone. It seems to me that every time I've had a real-life, honest to goodness, living, breathing friend, they've taken advantage of me, annoyed me, lied to me or flat out hurt me. I don't have any more of those living, breathing friends, and honestly, I'm sick and tired of trying to make them.

The ones that I can count on live all over the country and I've never met any of them face to face. We email, text, Facebook and so on, but I've never met anyone. Truth be told, it scares me. I'm fairly certain that we would get along wonderfully if we were ever to have the opportunity. But after what's happened to me lately by someone that was supposed to be on my side, I'm a little gun shy in the friend department. Sure, my online friends keep my deep dark secrets for me and I'm there for them if they ever need a virtual shoulder to cry on. Why can't I meet these people for real instead of online?

Instead, the people that cross my path pretend to be a friend to my face while twisting the truth about what they think are facts, then can't understand why I'm upset. I'm so done with the whole friend thing. Seems like I can't trust anyone I meet in person these days. I seem to draw losers like flies to honey. I hate that. I long for just a couple true friends. Someone I can call up and go to the grocery with or take the kids to the park together. Someone I can share secrets with and know they will stay a secret. Someone that won't spread rumors about me or try to break up my marriage.

The virtual world has been good to me. I've met MANY wonderful people and have few I consider to be close friends. But they're so far away. I guess I'm the type that doesn't play well with others. I'm not sure if I ever will be the type that will.

Missing So Much.

2010-04-12T09:15:00.000-04:00

I miss my old life. I miss the smell of the hospital. I miss the elevators. I miss knowing so many people in the hallways. I miss therapy. I miss deliveries of medical supplies that made my house look like a hospital.

I miss getting up every morning and doing trach care. I miss setting up the feeding pump and hearing it beep to be refilled at 3 in the morning. I miss the sound of the humidifier and concentrator. I miss sponge baths and the smell of baby shampoo.

I miss the sound of trachy belly laughs. I miss the sound of the suction machine. I don't miss the smell of the suction machine, though. I miss the clack-clack of the swing. I miss the sound of your toys. I miss the smell of your head.

I miss tripping over oxygen tubing. I miss adjusting your trach mask every ten minutes because you liked to chew it. I miss your stubborn, silly attitude. I miss your smile.

I miss your eyes.

I miss your scars.

I miss the sound of oxygen tanks clanking in the back of the van.

I miss the cuddles.

I miss the kisses goodnight.

I can't listen to "Peanut Butter Jelly Time" without crying.

I miss "Itsy Bitsy Spider".

I miss your adorable cheeks.

And your little chicken legs.

I miss your blue lips.

And messy straw colored bed-head.

I miss your laugh.

I miss your stinking attitude problem when you didn't want to stack blocks or color.

I miss the way you lit up when Sarah brought out the giant gumball toy.

I miss the look of satisfaction when you figured out how to manipulate a new toy.

I miss your beautiful, beautiful smile that lit up the room and warmed my heart.

I miss being your mom. I miss the chaos. I would gladly take back that life again. I would spend every day in the hospital with you if I had to. I would do trach care forever and a day. Feed you through your tummy without batting an eye. Push you in a stroller until I was old and feeble.

I would deal with our lives being filled with therapists, doctors, specialists and advocates. I would fight with the pharmacy every single month when your prescription was denied yet again. I would deal with the machines. I would go on 3 hours of sleep a day.

I would stack medical supplies to the ceiling in every single room.

I would sacrifice everything I have, everything I love, the air that I breathe.

For one more moment with you.

Stress, Insomnia, and a Bunch of Rambling

2010-03-29T10:58:00.000-04:00

I'm tired. So very, very tired. I am yawning repeatedly and my eyes are watering from lack of sleep. And yet, every time I lay my head to the pillow, I cannot sleep. My mind wanders and I can't relax. I've tried looking up obscure things online trying to bore myself. I had a bowl of oatmeal, hoping the carbs would make me sleepy. Both things have physically worked. I'm exhausted! And yet, that little switch in my brain refuses to switch off.

It's stress. It's the state of my kitchen. It's the 10 hours I worked yesterday. Remembering to make a doctor's appointment for Brandon. Wondering when and how I'm going to dye Easter eggs with the kids since I don't have any days off between payday and Easter. Surely I can come up with five dollars for eggs for them to color! Of course, even if we do color eggs, I won't get the joy of celebrating with them, since I work every single stinking Sunday, usually 10 hour days. I've missed out on every family celebration because they're held at lunchtime on Sundays. It means getting out of bed 2 hours earlier than usual after getting home at an ungodly hour. It will mean on Sunday that we must hurriedly hunt the eggs, then I will get to swallow a little food before groggily heading into work while everyone else continues to celebrate.

Sorry if it sounds so bitter. There are no fun times lately. I worked Valentine's Day, St. Patrick's Day and now Easter. I work with my sister and we have one other employee (who happens to be the owner's brother). My sister has off every Saturday, he has off every Sunday. Sure, I have off my two days during the week and MOST of the time, I don't mind my schedule. Really, just for once, I wish I had somebody accommodate me. I'm whining now.

Home life has been just as hard as work lately. Getting the boys to take out the trash is like pulling teeth. It doesn't help that it's starting to feel like the only time I see them is when I'm yelling at them to get out of bed before they miss the bus, or yelling at them to take out the trash. I need a vacation. From everything. Many people ask where does hubby come in to play with all of this. Sometimes you pick your battles, and it's looking like I've lost the war on this one. Sometimes I wonder if we live in the same house because it's what we want or because it's just easier this way. It's been the same way, day in and day out for 13 years now. It's not going to change. Hence, another reason for my stress. It's better we don't get into that one. Between his own poor health, his own insomnia, and his own stress, we are merely coexisting and doing the best we can. If he helps every now and then, great. If not. Well. There's always tomorrow. Why pick a fight over who's going to tell the boys to take out the trash when I can just deal with it myself and move on?

I can't stand much more of this lack of sleep. I want to go to bed. I really do. My sleep schedule is so confuzzled that my body doesn't know what the sun looks like anymore. I wake up every day at 7 to put the kids on the bus. At 7:30, I come home and my brain is going a million miles an hour, so I check my email, read, try to relax for an hour or two until I'm so tired I can't stand it. I shuffle to bed around 10ish (yes, that is a.m.) to try to sleep before the kids get home from school. That's until my phone rings, there's a knock at the door, or I get overheated from the sunlight trying to penetrate through my window. Sometime between 2 and 4, I get up. This usually gives me about a 4 hour nap. Then I have lunch, shower, look in the kid's backpacks and then we are in the car by 5:15 to take me to work. (unless it's the weekend, then I'm going in anywhere between noon and 3) Work is until midnight. Hubby comes to pick me up and we do the 30 minute drive home...unless there is the need to stop by the grocery or something like that. Typical nights, we roll in the drive around 1 in the morning. Toss the kids back in bed, then fix dinner for hubby and me. Do a load of laundry while we eat, then toss it in the dryer on the way to bed. Sometime around the 3 a.m. mark. Up again at 7. That's 4 more hours of sleep IF I can fall asleep.

It wouldn't matter if I drove (which I can't, as in, never learned), because I would still be on the same schedule. I dread Spring Break. While I do love sleeping in, my kids have not gotten the hang of it. That is why on Thursday night, I finally have a clean kitchen and by Saturday morning, they've trashed it again, just in time for me to head into work and no time left to clean it again until Wednesday. Thank you, sweet children. Sure, they're big enough for chores. YOU come make them do them. Make sure Brandon has his medication. You'll have a 50/50 shot he's going to listen if you do. You'll have to bribe Matthew. Lately he's discovered his Mp3 player. No chores, I confiscate. Worked so far. Of course, until Brandon comes behind him and dumps a bowl of cereal in the middle of the floor, covers it with a shirt and tells nobody for 4 hours.

It's approaching 11, my mind is still full of racing thoughts and even blogging them out isn't very affective today. My head is wobbling as I type. My eyes crossing and blurring. And yet, I still can't find my off switch. It's going to be a long day.

Today, What Would Have Been

2010-03-25T20:32:00.000-04:00

Today, you would have been 3 and 1/2. It's your half birthday. Except I'm not hugging you, tickling your feet or ruffling your hair. I'm looking out the front door at the rain. Just like the day you died and the week after. Heaven's tears.

I'm not sad. I'm melancholy. Reflective. What would you being doing today? Would we have gotten the trach out for good and would I be rolling my eyes as I shushed you and your brothers? Would you be walking? Maybe? I don't know how your skinny little chicken legs would have ever held you up, much less took a step. I imagine, as I look out my door that I would see you running. Picking flowers. Laughing. Hair all a mess and dirty feet.

Some days are easier to get through than others. Today was an easy day. I thought about you fondly. Only one or two tears welled up in my eyes.

Matthew has a hard time. He hates hearing the sound of your name. Brandon on the other hand, loves to see your picture and talk about you all the time. They fight a lot. I have to remind them that they have each other.

Daddy loves you, but he's quiet about it. He's very private with his grief. Sometimes we will talk about you and he will stop me and tell me it's enough.

I can't stop talking about you. You're my hero. You made me who I am today. I wish I could say that to your face, but even if I could, you're only 3 and 1/2 today. For everything you'd been through in your short life, you would have probably understood.

Would you still be signing? Be in preschool? Grown into the Terrible Twos? What I wouldn't give to spend a day in Heaven to see how you've grown.

I love you, sweet Tommy. On your Third and a half birthday. I love you every day. I miss you more and more. The physical pain of losing you has subsided, but the longing, the aching, the feeling of closing my eyes and reaching for you in thin air never goes away. I know you are just beyond my grasp. Just beyond my senses, and yet, somehow, I feel you there. I feel you in the whispering wind.

I see babies nearly every day. The ones that are younger than the day you died must have met you in Heaven. They smile knowingly at me and I know that they know I am your mom. It comforts me and fills me with love knowing you told them about me. The older ones let me see how big you would be. Gosh, 3 year olds are tall!

Keep taking care of my heart for me. Someday, when I get to Heaven with you, we can share it again. Happy Half Birthday. I love you always.

Life Going Well

2010-03-25T00:11:00.000-04:00

Life is going well so far. I do have to constantly remind myself that my depression does not run my life. Every day is a challenge. I've tried to keep what is important in the front of my mind, and things I have no control over out of my thoughts if I can.

This week has been good to me. I was able to work a 5 day work week instead of the 11 in a row I pulled last week. I was able to get a small treat for myself and tonight we took the boys out for pizza. Being a "normal" family again isn't as hard as it used to be. Nobody knows we are really a family of 5 and that one of us is an angel. Tonight, we were just a mom and dad with two boys eating pizza and watching the big screen tv.

I let the boys decide what kind of pizza to get. I'm trying very hard to eat well, so I knew I would only have one slice no matter what it was. It happened that they wanted Meat Lovers with a stuffed crust. Oh My! They enjoyed it very much!

So, me eating right... Yep. For about a month now, I have not had a soda that was not diet. And more recently, I've gone the diet no caffeine route too. I have cut out red meat to about once or twice a week instead of typically 5 or 6 times a week, including lunch. I'm also trying to keep it under 1200 calories a day. Movement/exercise is still a challenge. I walk the boys to the bus stop every morning, about a football field's length. I'm trying to walk back at a faster pace than I usually do. I think the combination of eating well, squeezing in a little exercise and keeping my thoughts as positive as possible can only have a good effect on my mental well being. I also found I still had about 2 weeks left of Prozac, so I'm taking it for now.

I'm hoping in a couple of weeks that I can rearrange my schedule enough to be able to meet with the director of the clinic. Until then, one day at a time.

Depression

2010-03-19T03:40:00.000-04:00

From Google Health: (full article here)

Major depression is when a person has five or more symptoms of depression for at least 2 weeks. These symptoms include feeling sad, hopeless, worthless, or pessimistic. In addition, people with major depression often have behavior changes, such as new eating and sleeping patterns.

This is my diagnosis. I've struggled with depression since my teens. Back then they told me my diagnosis was chronic recurrent depression, but when Tommy passed away, I slipped into Major Depression. There's no going back. For many years, I was on a low dose of antidepressants off and on. When I was diagnosed with MD, my dose was upped and I have been on it for over a year. Due to circumstances beyond my control, I am not able to get medication at the time. Despite the fact that I have been well managed for so long, since I am new to the area, the clinic that follows me requires me to do talk therapy for 3 months before giving me meds. The problem with this is that I must meet with the director of the clinic first and she only sees people on certain days at certain times, which just happens to be while I am working. I've tried to work around this, but one thing leads to another and I'm not able to get off of work on the day I need or she's book up if I can. Very frustrating.

Today I bought a bottle of St. John's Wort. It's probably nowhere as strong as the antidepressants I have been on, but it's better than nothing at this point. I've also decided I have this blog, so why not use it therapeutically?

Depression affects my life every single day. It is a medical condition that I cannot just "get over". Little things become very overwhelming. Being tired or hungry makes it worse because I am not at my best so it's harder to deal with symptoms. I cry often, many times for no reason. Maybe the song on the radio hit me the wrong way or maybe my husband didn't tell me he loved me at the right time. I get angry and irrational too. Sometimes it lasts for just a few minutes to several hours. I have to constantly remind myself that life really isn't this bad, and that my depression skews my view.

To say that my emotional life is a struggle is an understatement. Imagine one moment you are having a fine, ordinary day and WHAM! Suddenly you feel as if everything you've ever done in your life is a waste, your kids are better off without you, you call yourself a loser, and pick fights with those you love. For a few hours, you are stuck in a puddle of feelings of being worthless. Eventually, it goes away. Usually after sleep. While on medications, days like these might happen once every two months. Without medication, it's 24/7. A constant fight that I battle with myself.

Years of therapy have taught me that I am worthwhile. I am entitled to my feelings, but I cannot let them rule my life. That is where this blog is coming into play. I cannot, CANNOT keep things bottled inside. The words, the feelings, the emotions MUST come out in order to move on each day. Some of the things I write might be uncomfortable. I don't know that for a fact just yet, but I will be writing in order to get things off of my chest. Comments are welcome, but try to keep things positive and use constructive criticism. The worst thing a person with depression needs is more pressure and negativity.

I am trying to heal. While I have no secrets, not everything I've been through in my life is know by everyone. I came from abuse, married abuse (divorced abuse) and finally when life was going well, we had and then lost Tommy. I don't like being depressed. I don't like hiding my tears from the customers at the store. Life should be filled with laughter, as it's been said before, this blog is a place to empty my thoughts when they become too much.

Thanks for coming along for the ride. There is NO shame in having a mental condition such as depression. I pray someone will come across one of my posts and recognize themselves and seek their own therapy.

Green!

2010-03-17T00:30:00.000-04:00

I'm such a bad, bad blogger. No updates in over a week. I know I said I would be cutting back, but darnitall, I can find something to talk about, right?

Let's talk a little green today.

My kids are so excited for tomorrow. Nothing special going on, except that it's Saint Patrick's Day. We're not Catholic so they have no idea what a saint is, nor do they really care who Saint Patrick was. What they care about is the green. Green shirts for school tomorrow, something dyed green for dinner tomorrow night, and Leprechauns darting behind the house to hide the gold. And it's all my fault.

It started years ago when my oldest was about 4 years old. He would wake up to a green breakfast, like in "Green Eggs and Ham". We'd hunt Leprechauns if there wasn't snow on the ground. (We lived in Maine). Of course this had his dad rolling his big Scottish eyes at me. Hehe. I'm Irish. What can I say? (Okay, I'm just a little Irish, but Irish is Irish on Saint Patrick's Day)

Growing up, I never left the house without wearing green on March 17th. Ever! My mom took great care to make sure I wasn't pinched at school. This year is no different. I've already painted my nails shamrock green. I have my green glitter covered hat from last year. Debated on wearing it or not. Matthew wants to wear it to school, but I'm afraid it would get destroyed. He will just have to be satisfied with wearing a green shirt.

I have to work, so that cuts into our Leprechaun hunting time. Usually it's done in the afternoon (when its warm) and we search patches of clovers for 4 leaf clovers and clues to where the Leprechauns are hiding. Matthew swore he saw one this morning lurking around. Instead, we will look for them while waiting for the bus. I can't wait until they get up. I have already dyed the milk green.

To top it all off, I have the ULTIMATE Irish accessory. I married an Irishman! He can trace his lineage back to an Irish king. There's no living with him around this time of year, as he insists we all refer to him as "Prince Robert". I'm kidding. He doesn't insist, but he does get a kick out of it.

Happy Saint Patrick's Day!!!!

Spring Has Arrived!

2010-03-08T08:37:00.000-05:00

Spring is here! How can I tell? I woke up today, got the kids ready for school like every other Monday and we walked out the door. I sneezed. I sneezed again. Before the bus made it, I sneezed about 5 or 6 different times. Ahhhh....pollen....

It was 37 degrees at the bus stop this morning. Perfect for my favorite hoodie, cropped pants and pink snow boots. (Hey, the ground is still muddy!) The school says I have to be at the bus stop, they didn't say there was a dress code. Good thing I'm past the point in my life where I worry about what people must think of me, because 5 cars were stopped behind the bus and they all saw me in cropped pants and snow boots. I'm kind of hard to miss.

On the way to the bus stop, Brandon and I spotted life growing from the cold ground. Beautiful bright green shoots that will become beautiful bright flowers.

As I walked home, I noticed buds on the trees and just how lovely everything looked. I love Spring.

Spring brings something else too, here in Kentucky. Rain. Lots and lots of rain. Right on schedule with the flowers and budding trees is a weather forecast of a 40 to 60% chance of rain for the next 7 days, starting tonight. I'm not too worried about the weather because I happen to be working for the next 7 days so I won't be missing anything. I'm actually hoping for a really good morning thunderstorm to lull me back to sleep after the kids have gotten on the bus. Let's just hope Mother Nature keeps the tornados to herself this year. Nothing ruins a good nap like the prospect of a tornado. But, it's Kentucky and it can't be helped. It's Spring.

Here's a few more pictures to show you why I live where I do and why I refuse to move closer to my job. I wake up every single morning and look out my front door at this.

All Blogged Out

2010-02-25T02:19:00.000-05:00

A quick update on life.

We attended the God's Special Little Hearts Heart Walk last week. It was wonderful! It's inspiring to see 50 kids running around and not knowing who's a CHD survivor, a sibling, or a friend.

Matthew chose to do a project for school on Vivien Thomas. He was a surgical technician in the 40's and black. He perfected the surgery that went on to be known as the Blalock-Taussig shunt. A life saving procedure for countless children with cyanotic heart defects like Tommy. Dr. Thomas didn't get the recognition he deserved during his life for the amazing work that he did. I'm glad Matthew chose him as his "Inventor" for Black History Month. So many more people are going to be aware of not only Dr. Thomas' life, but of CHDs because of Matthew.

We've finally found the right medication for Brandon!!! It's so nice to see him cooperating with us. He still has outbursts, but he recovers and does what we ask of him. My only concern is he is now VERY chipper! Sometimes to the point I can't get his attention. He just chatters away, happily and content. I'll take that trade off!

Not much to blog about these days. I'm emotionally tired out from posting Tommy's story. Life is very normal and mundane this week. Just the way I like it. Forgive me if I don't blog too much right now. I need to stretch my brain. As I deal with daily life and grief, I am finding it easier to let the tears fall when they need to fall instead of bottling up for later. Same with blogging. I'm able to get my feelings out much easier these days and not waiting until I am over come and need to vent.

I'm not quitting the blog! I just don't have anything interesting going on!

And that is a wonderful thing.

Epilogue

2010-02-13T04:37:00.000-05:00

Once we laid Tommy to rest, my mother in law moved the boys in with her and enrolled them in school. The State of South Carolina would NOT drop our neglect charges until we'd satisfied them. Rob and I came home to our empty home in hopes of one of us getting a job. Neither of us could find one. We lived off of the kindness of strangers and by me donating plasma. I wasn't able to do it often because it made me very, very sick. Nothing like throwing up on yourself in a room full of strangers. Or passing out. I did both on two separate occassions and I kept going back for that $20 every 4 days.

Rob moved out. Grief is a funny thing. I turned it inward on myself and he chose not to deal with it at all. I was alone in my empty home. My kids were half way across the country, my husband was talking divorce and my baby was in Heaven. On top of all of this stress, we had to take parenting classes for social services, and faced foreclosure on our home. I packed and a few times a week, Rob came by and we took our things and put them into storage. His things on one side, mine on the other. Eventually, we finished the classes and jumping through all of the various fire laden hoops that were set before us. On October 30, 2008, 3 and half months after taking our boys away from us, a judge determined that the case had no merit. All charges were dropped and custody returned to us.

Too late. Tommy never came home. During his life, so many organizations had helped us, so I decided it would be best to donate everything of his. We had medical equipment, his crib, clothes, Bumbo chair, boppy pillows, carseats, stroller, swing, diapers, and so much more. I called Tommy's Early Interventionist. They'd helped us so much. When our air conditioner went out in the middle of summer in Charleston's heat, they got us a new unit. Medicaid paid for all of the medical equipment that we could no longer use. I knew there was somebody out there that needed what we had. I don't know how I did it, but we put everything in the back of a truck one afternoon and EI took it away to be given to people in need. When it came time for us to move away once our home was foreclosed on and there was no saving it, I gave them my keys and told them to take everything that was left, including the air conditioning unit.

I moved to Kentucky and Rob moved to another state. About a month later, he would come home to KY. It was a long, hard, painful road, but we worked our marriage out. Honestly, I am glad I had the distraction. Longing for my marriage and my husband gave me something else to focus on. Something I could "fix". I couldn't bring Tommy back. I spent some time in a mental health facility when I moved to KY. I have been on antidepressants for years, but losing so much in such a short time caused me to have a nervous breakdown. Once my medications were adjusted and I had several intense therapy sessions, things started to turn around.

I grieved Tommy slowly. I've never had the bottom fall out. I've had tears flow freely many times, but I've never had what I thought would be grief. I've never curled up in a ball and shut the world out. I've never locked myself in a room and cried for days. I feel sometimes I should have felt that way, but I had a family to put back together. I didn't have time to feel sorry for myself like I should have. Once we were all in KY, we moved to a mobile home owned by Rob's grandmother. We put the kids in school and started them in therapy. I got a job. Rob saw a cardiologist who told him he shouldn't work. Since then, our fight has been for disability that has so far been denied twice.

We laid Tommy to rest in Bardstown Cemetary. We drive passed it at least once a week. He's close to the road and we wave and blow kisses when we drive by. I don't make it into the cemetary very often. I don't know how to drive, so its up to Rob to take me. He still doesn't deal very well and chooses to NOT deal, which is okay if that is what he needs. Going to the cemetary with me is very hard for him. Besides, I know Tommy is always with me, no matter where I am.

Life has gone on. We're all changed. I'll always be Tommy's Mommy. I've given myself permission to be happy. Tommy loved to laugh. It wouldn't be fair to him to not laugh too. Next week, I am going to Owenton, KY for the Heart Walk put on by God's Special Little Hearts. There will be a memorial walk in honor of our angels. I was so lucky to be his mom. So blessed. Every moment with him was a miracle. With every breath that he took and every beat of his heart.

Tommy's Story~Goodbye

2010-02-12T03:20:00.000-05:00

I hope I can make it to the end of the story without tears. I doubt it. 18 months and 2 days ago, we finally brought Tommy home from the hospital from his month long stay! His tonsils were healded, he had been successfully capped and finally, had his trach taken out. Wednesday night we came home and all was quiet. Thursday, we all went to court. My mother in law was given official full custody of all three kids. No more foster care. Now we had to start parenting classes for the state and jump through a few more hoops, then the kids could finally come home. We had another hurdle to deal with. Rob lost his job. Friday, August 15th was his last day of work. They had given him notice that Monday and told him he could finish out the week. We needed the money, so he worked.

Thursday night, August 14, early morning Friday, August 15th, Tommy began to have a barking cough with severe retractions. Everyone was so exhausted. Rob had to get up in a few hours for work, my mother in law hadn't been sleeping well. I really needed to find a way to help Tommy feel better without waking up everyone in the apartment. I gave him a breathing treatment, but it didn't work, so I took him into the bathroom and started the shower with hot water and sat on the floor doing CPT (tapping all over his chest and back to free up any gunk in his lungs so he could cough it up). He had such a hard time breathing. Every time he would start to settle down, he would almost be asleep and he'd wake himself coughing again. I rocked him on the bathroom floor for an hour until he finally started breathing normally. I took him to the living room and the transition from the warm, moist air to air conditioning started him coughing again. Back to the bathroom for another 30 minutes. When I brought him out again, he was finally able to sleep. I never heard any more from him that night except peaceful breathing. My thought was he forgot how to use his
mouth to breathe and was struggling for air through his closing stoma.

The next day, he woke up fine and I hooked him up to his feed around noon. He started having trouble breathing again, so I called his ENT's nurse. She told me to bring him to the ER. Once we got there, his oxygen sats were in the 50's and he was retracting so hard I thougth his chest would cave in. Respiratory was giving him 100% oxygen, he had a nurse on each side trying to get an IV started. Each one poked him at least twice before they got a good stick. Tommy didn't even care. Dr. White (Tommy's ENT) came in. He took one look at Tommy and popped a trach into his stoma. Tommy took one giant breath and looked at Dr. White with a look that said "thank you!". He admitted Tommy and told me he would be away for the weekend, but would turn over his care to cardiology until he got back Monday. There were no rooms on the cardiology floor, so Tommy would have to go to the regular pediatrics floor.

Once we were in our room, Tommy was not himself. He slept and slept. He fell asleep sitting up while playing. He napped all day and all night. Something was very wrong. Tommy barely took a nap most of the time, and now he was sleeping 23 out of 24 hours. Saturday morning when cardiology rounded, it was not a doctor that saw Tommy on a regular basis. This doctor knew Tommy's case, but had not seen him for a year, even then, had only been on his case once, in cath lab. When I spoke of my concerns, I was told "He must be depressed to be back in the hospital". Excuse me?? Mr. Flirt With Every Nurse loves his second home! I was offered Child Life services instead. By Sunday, he was no better. I begged for them to do a white blood count. I was told all of his tests came back negative when they did them on Friday. On top of it all, he was needing oxygen again and his sats were dipping off and on.

On Monday, Dr. White was back. He said he really didn't know what was going on, but speculated Tommy worked so hard to breathe without his trach that he was just exhausted. He thought maybe we'd gone too fast and Tommy really wasn't ready. He did give us the okay to start capping him again once he was able to make it off of the oxygen again.

Tuesday came. Tommy was taken for an upper GI and a swallow study. The GI showed his Nissen was holding tight and he was not refluxing. The swallow study was a different story. Tommy's swallow had become more motile in the past few months and he had been able to swallow successfully. This was a HUGE deal because he should not have been able to swallow at all because of his defect in his esophagus. However, the swallow study that day showed significant aspirations. I really think we were all ready to cry. We had worked so hard with him. We didn't know if it was because his tonsils were out, because the myotomy he had done the previous December was no longer working, or just a fluke. We also didn't know how long he had been aspirating. It was a sad day. His speech therapists had worked so hard with him for a sucessful swallow and we were back to square one.

~~~~~~~~~~~~~~~If you don't have tissues, get them. ~~~~~~~~~~~~~~~

Wednesday, August 20, 2008. Tommy's oxygen sats kept dropping. Speech came by to give Tommy sterile colored water to help him practice swallowing. Sterile water wouldn't hurt his lungs. It was not good. He coughed blue out of his trach immediately, indicating it had gone to his lungs instead of being swallowed. Respiratory felt the need to do a deep suction on Tommy and put a catheter down into his lungs to try to break loose what would not come up. It was very controlled and normally I would not have consented, but we had tried everything else to get his sats up. He did get back a bit of mucous and Tommy was able to work some of it out. Enough so that his oxygen levels were acceptable enough to put his cap on him. About an hour later, Tommy fell asleep, but was making a strange noise when he breathed. I had respiratory listen. He said to uncap him until he could ask Dr. White what to do.

I was tired, frustrated, angry. In the two years of Tommy's life, I had never hated the hospital until that day. I didn't know why. I wanted to scoop Tommy up and just walk out. I was exhausted. Totally wore out. I laid down on the couch in his room to try to sleep. I had barely dozed off when Tommy's nurse came into the room. She bumped into the night stand sending the phone crashing to the floor waking Tommy and me up. She apologized and then told me that Dr. White said to go ahead with capping as soon as Tommy woke up. Guess what? Her noise woke him. I put his cap on him. It was 4pm. Tommy was looking like himself again, but still very tired. He'd had therapy every day, and was given an antibiotic, but his IV blew out the day before and we were told we were probably going home Thursday, so there was no need to stick him again. His tests came back negative. No need for an IV.

We watched "Nemo" over and over again. He blew me kisses. Signed "I love you". Around 8, an respiratory technician that we didn't know came into our room. He started to give Tommy a breathing treatment and exclaimed "he capped?" Did you not read his chart? He proceded to give Tommy the breathing treatment by mouth. About 3 minutes into it, Tommy began to retract and look very anxious. It told the RT this is what he had done when we brought him into the ER. He told me it was probably just anxiety and if he continued after he left to just take his cap off. I didn't believe him. After he left, Tommy became very agitated. He had terrible, terrible diaper rash from all of the antibiotics and I knew I had to change him right away.

I layed him down and as I was changing him, I noticed he had stopped mid-bowel movement. He was struggling. I thought it was because of the pain. His alarms went off, as they often did when he wiggled. I turned and pushed the button and as I did, Tommy peed on the bed. The alarm went off again and this time I SAW it. His heart rate was dangerously low. I looked at Tommy. His eyes were rolling into the back of his head and he was unconscience. I quickly ripped off the cap and bagged him as I hit the call button. I picked him up and shook him until he cried. Not like a rag doll, but to rouse him. I told the nurse to get me the head of respiratory and cardiology in his room NOW. I told her everything. She though Tommy had a vagal response when he had his bowel movement causing his heart rate to go down. I picked up Tommy and held him and rocked him while she changed his sheets.

Tommy fell asleep on my shoulder, sweating and breathing so fast, it sounded like he was running a marathon. I had his nurse turn on his oxygen for him. I laid Tommy on the bed to suction him and got back blood. The new RT came to the room. She knew Tommy very, very well. She turned his oxygen up to 100% Tommy coughed and blood came out of his trach. He looked at me and let out a little cry. His sats started dropping. 50's, 40's. She started bagging and called for the crash cart. Within a minute, his room was filled with medics. Tommy was coding. His feeding pump was still attached. I turned it off for them. His monitor was still beeping and I could see his sats dropping. They started CPR and I called Rob to come to the hospital. He needed epinephrine for his heart but he had no IV. An emergency one was started in his groin. I saw the blood squirt into the air as they got access and started the epi, sodium bicarb and other medications. I saw and heard his monitor flatline. I turned it off.

The entire time I am 2 feet from them, watching them try to save my son. It never once, NEVER crossed my mind that we were losing him. I knew they would stabilize him and move him to the OR to repair his heart. Three different people tagged in to do CPR. Orders were called for a cuffed trach but one wasn't on the cart. The on call doctor put in a T-tube into Tommy's lungs and bagged him himself. He came to my side and said to me, "When a person has had 3 shots of epinephrine, that usually means they're not coming back." Still in denial, I played along like a trooper and knew at any minute Tommy would be whisked to the OR. Then he said, "We've given him 5". Point blank, I asked him if my baby was dying and he said yes. A chaplain came into the room. He prayed with me and I begged God to save Tommy. The doctor told the medic to give Tommy another shot of epi. I saw Rob come into the nurse's station and I screamed for them to let him in. The doctor said to call time. It was 10:20 pm and my son was gone.

The doctor put him in my arms, just as Rob walked into the room. I told Rob he was gone. Rob said he prayed he was only sleeping when he saw us. "Nemo" continued to play on the tv. I turned down the volume, but let the movie play. One by one, every nurse on duty on the cardiac step down and the PCICU filed in when news that Tommy was gone reached them. They kissed him, rubbed his head and cried with me. Tommy's cardiologist and ENT both came from home and sat and cried with me. The phone rang. It was my mother in law. We told her that he was gone. Rob couldn't take it. Once he knew I had friends on the way to be with me, he left. He needed to be alone.

My friend, Melinda came and her brother Ernie. I've know them both since I was 12. For two hours, I held my sweet boy. I took his picture. I took a lock of his hair. They both held him, and finally, they carried him together to the coronor waiting in the hallway. I shut the door so I couldn't see. I took pictures of the room. I packed up our things. I took the gown he was wearing with me. Then, I walked out of his room.

I didn't change my clothes for 3 days. I couldn't. My shirt still smelled like him. When I did change, I put the shirt away. I still have it in storage. I've never washed it. We had a memorial in Charleston, and a week later, we all traveled to KY to lay him to rest in the family plot in Bardstown Cemetary. We blew bubbles at the service and released balloons to Heaven for him.

Cause of death would be listed as lethal arrythmia and hypoxia (lack of oxygen). Later, his autopsy would tell us that Tommy had undiagnosed bronchopneumonia. We would also find out he was in heart failure. If we had started him on antibiotics the day he came to the ER would it have mattered? I try to keep that question out of my head. In the end, Tommy died of congenital heart defects. No matter how you read the autopsy, his heart stopped beating because it was not strong enough to support his lungs or the rest of his organs.

NINE children a DAY will die from their heart defect. I hope telling Tommy's story has touched a nerve. There is no cure for heart defects and life with a child with CHD is unpredictable. I knew from day one that Tommy would be a fighter. I knew he would have to be no matter what. In the end, the work he came to do on this Earth was done in 22 months, 25 days. Tommy died 35 days shy of his second birthday. On that day, his heart became whole. I know this because he took my heart to Heaven and left his broken one inside me.

Tommy's Story~A Month In The Hospital

2010-02-11T00:13:00.000-05:00

While dealing with all of the crap the state was throwing at us, it was business as usual for Tommy. Meaning he was in the hospital and had procedures scheduled. Once his flareup of pseudomonas was under control, he was ready for his already planned tonsillectomy. The end goal was to get out his trach permanently so that we could move on with his next open heart surgery~~the much anticipated Glenn! Typically the Glenn happens around 6 months old, but Tommy's lungs were nowhere near ideal at that time, and even at 22 months, every day we waited helped his lungs heal that much more.

We spent every day with him and when I was cleared to have unsupervised vistitation, I stayed 24/7 with him. I came home once or twice a week to spend time with the boys with their grandma, to get a fresh set of clothes and off I went again. Laptop with me, I blogged, I took pictures and video, I shared the journey of our medical roller coaster.

At the beginning of August, Tommy's tonsillectomy took place. He did great and was back in his room very soon after and just on Tylenol for a little while. The kid always bounced right back. Two days later, I got a frantic phone call at home from his nurse telling me they needed verbal consent for the OR. ( I kept medical say so over my kids, despite them not being allowed to live in my home. Whatever. Stupid Social Services....) I rushed to the hospital and got the details. In the end, he had just burst his tonsillectomy site and they went into the OR to cauterize it to stop the bleeding. The procedure was over in less than an hour. Leading up to it turned out to be a great story from the nurse's point of view.

She had come into the room to get his vitals for the morning, get him up and ready for the day. He was laughing and playing with her as always when all of a sudden he coughed and spewed bright red blood from his mouth and trach. They also drew blood from his Gtube. Since it was a Monday morning, rounds were going on. Tommy packed about 20 people into his room as it was tried to determine why a (still laughing) baby was spewing blood. They said he never did stop laughing or playing. Didn't care he was coughing up blood. His nurse was quite a wreck though!

Our plan for that morning had been to start capping his trach to see how he did not using it, but just his mouth and nose to breathe. After the OR trip, it was postponed for another week to be sure he was healed first. Like most kids with medical issues, Tommy set his own schedule. We had a quiet week of playing, healing and lots and lots of "Finding Nemo".

Finally, the day came! The day Tommy would try his cap. It was thought he would need oxygen since he had been on it for over a year. The repiratory therapists tried to put a nasal cannula on Tommy to wear with his cap. He wasn't having it. Everyone thought this was a huge setback, until it was realized he was holding his own. Sure, his sats were hovering around 70ish, but they weren't dropping. One hour. Two hours. Still capped. Breathing with just his nose and NOT on oxygen. I can't tell you how I felt to see that! Two hours became twelve and before I could blink, it was the next day.

Tommy was capped for three days and then we had our miracle. The day we had waited to happen for so long. August 11, 2008, Tommy had his trach taken out! Here's video we made of the moment. He's only crying because the doctor put on gloves. Gloves usually meant someone was about to stick him, so he was a little anxious. Plus, he didn't know the doctor very well.

We spent 3 days in the hospital for observation then we were sent "home". Home was to my mother in law's apartment, not our home. The kids weren't allowed there until the investigation was complete. We left on August 13th. A Wednesday, with nothing but an umbrella stroller. No oxygen, no machines, no trach supplies, just a kid and his mom and a giant smile on both of our faces! It was the last time I would take pictures of Tommy. I didn't know. I wish I had known.

Tommy's Story~A Knock at the Door

2010-02-10T01:44:00.000-05:00

These next few blog posts are going to excruciating for me to write, but I cannot leave out any part of our story, no matter how horrible and ugly it was.

July 15, 2008 was like any other morning. I woke up when Rob went to work and was in the living room when Brandon woke up. He had just started having mild encopresis (can't hold the bowels) and was wearing just his underwear with a tiny stain. We cuddled on the couch while Tommy and Matthew slept and enjoyed the quiet together. We had breakfast and talked. There was no rush. The house was a mess from never having the time to get anything done except tend to Tommy's needs and get a couple hours of sleep.

There was a knock on the door. I saw police on my door step. Turns out it was a wefare check called in "anonymously". They were told we had a pest problem, which was true. We had roaches. We baited, put out traps and had an exterminator come out once a month. We couldn't just pick up a can and spray. That would have been very dangerous for Tommy. We couldn't use typical household cleaners, use perfume or expose him to anything with a heavy scent. His lungs were so terrible that any odor would be inhaled through his trach and straight into his already damaged lungs. So we dealt with it the best way we could. The exterminator came on days Tommy was in clinic all day so there was no smell when we came home. Funny, we never smelled anything when he was spraying and he tried to convince us that the chemicals were "odorless". I had too much on my plate to argue with him at the time.

The two policemen came with two social workers. Within an hour, my kids were gone. Just like that. They called an ambulance for Tommy's transport and put the other two in the social worker's cars and left. I was given brief reasons for taking them. They could see pests, the toilet hadn't been flushed, sleeves from the boy's clothing were hanging out of the dresser drawers, a pan was soaking in the sink, dirty laundry piled in front of the washer. They took pictures and told me I had a hearing in two days to place the kids in foster care until further notice. No visitation. No going to the hospital to see Tommy. Nothing.

After they left, I started at one end of the house and cleaned to the other end. It took one hour. ONE hour. I took pictures and went to court. I showed them to the social worker, but she said it was too late. An investigation had to done. Tommy was placed on a floor at the hospital that was not familiar with him. I frantically called his doctors to notify them where he was and to have him moved to the cardiac floor where they knew him and I trusted them. My mother in law dropped her life, moved to SC and got an apartment so that she could get custody. They still made her wait three weeks.

I called Tommy's nurses several times a day. They said he was admitted with a fever and there was talk from the on call doctor about giving him antibiotics. I let her know she did NOT want to do that. Tommy was C-Diff positive. Because Tommy had been on antibiotics for so long, his body had rid itself of the good flora in his gut, causing an overpopulation of the Clostridium difficile bacteria. Giving him more antibiotics would cause another flare up and could cause severe dehydration from the number of exploding diapers he would begin to have. I'm so thankful they consulted Tommy's regular doctors first and instead used a specific antibiotic that would combat the c-diff as well as his infection, which turned out to be a mild flare up of pseudomonas, which is a bacteria typically found in people with tracheostomies.

Two horrible days went by before social workers consented to giving me supervised visitation. They named my mother in law as my supervisor. The joke was they were afraid I would come in and dirty his room when the nurses weren't looking. By this time, Tommy had been moved to the cardiac stepdown unit. He was so excited to see us. I had not left him alone in the hospital overnight since he was in PCICU as an infant at birth. Only a few people knew why Tommy was there. I was not ashamed to tell his nurses what had happened. I should have been given help to take care of my family, not had them taken away. We visited him as much as we could. My social worker finally showed mercy and gave me unsupervised visits with Tommy as long as he was in the hospital. I moved right in!

When I wasn't at the hospital, I was "complying" with Social Services. Our home was not only not "clean" enough for them, but they felt the need to tell us we needed things like new kitchen cabinets and new flooring in our bathroom to make the place "livable". It took us about $500+ to make all of the repairs they suggested. A new vanity in the bathroom with a door instead of just a sink. Flooring, cabinets. Cleaning supplies to "prove" we cleaned. About 10 cans of insecticide to "prove" we were doing all we could to remove the pests. An investigation did find that the exterminator was not leaving chemicals in our home, but probably water. Too bad for us, Social Services let us feel that was our fault.

We finally had a court date that found us "under investigation for negligent child abuse" and custody was granted to my mother in law. By this time, Matthew and Brandon had been not only separated from each other, but each had been placed in three separate foster homes each in the three weeks they were away from us. Matthew had been mistreated in at least one and to this day, Brandon doesn't talk about it. He was just 5 and we just don't know what happened or who he lived with or how he was treated. They moved in with my mother in law around the first week of August, and we thought we were finally on the road to putting it all behind us. Tommy was never released to foster care. His wise, caring doctors found reason after reason for Tommy to stay an inpatient. I am so grateful to them for taking such good care of my little guy.

During his stay, Tommy fell in love with a movie. "Finding Nemo". The rooms have on-demand movies and his nurses would flip through movies for him and put one on to entertain him during the day. They tried all of the Disney movies in their arsenal, but "Fish" always won. Tommy would bouce up and down, pointing at the television and sign "fish" until they changed the channel to his favorite. Then he would clap with glee. Once the movie was over, he'd start throwing toys into the hallway until they came to start it over. Just because the stinker couldn't talk, didn't mean he couldn't tell anyone what he wanted and he knew exactly what he wanted!

Tommy would stay in the hospital for 29 days while custody was worked out. That journey was a blessing in disguise.

Tommy's Story~ Communication!

2010-02-08T03:46:00.001-05:00

Tommy was doing so well with his Passy-Muir speaking valve. We even began to try tasting and swallowing. He loved blue yogurt. I dyed it blue so we could make sure it was going to his tummy and not his lungs. If it was in his lungs, he would cough out blue. Our cue he was aspirating again. He was learning sign language and was communicating with us. He loved to watch the Signing Time videos. He would clap his hands (to get our attention), point to the television and sign "sign". We would put him in his swing so he could watch tv and he would wiggle and laugh. Matthew, Brandon and I always watched with him so we could learn the signs as well and then we would use them.

Tommy didn't have to communicate his "needs". He didn't feel hungry because he was fed by a pump on a strict schedule (couldn't lose those calories!), he went to sleep on a schedule, he had medications on a schedule, therapy on a schedule. You get the idea. If Tommy communicated it was because he wanted something. He was very good at pointing to what toy he wanted. He'd also let you know when he was done with it because it was promptly thrown. Tommy loved to use his "words" with us, and loved we responded to his signs. His very first sign was "play". What a happy thing!

After that, the signs kept coming. More, All done, That's enough, Go, Sign, Play, Eat, JUMP! Yes, "jump".

I've touched on Tommy's developmental delays and how he had therapy once a week for pretty much his entire life. Tommy worked HARD on his physical skills. Rolling was first and he learned it was comfy to sleep on his side. He didn't learn to roll to his tummy until he was about 18 months old. After that, he was a tummy sleeper. Sort of. He liked to keep one leg bent just a little, but I do too, so I think that was just a little of me in him. After that, the big stuff started happening. Tommy finally learned to sit on his own! 18 months old and finally able to sit is a huge feat. After that, he learned to turn himself in a circle while sitting. We tried hands and knees, but he wasn't strong enough to hold his body weight. I managed to get him up once or twice, but it wore him out.

So back to "jump". Once he was able to sit on his own, we got him an exersaucer. His nurse had the idea to raise it all the way up so his feet just touched the ground, no slouching with bent knees. Wiggling to get his balance, he realized he could control the saucer and began to jump! His feet stayed on the ground for the most part, but he was jumping. He loved to bounce until fell asleep. Then he would cry because his poor legs hurt, then point and sign to jump again. While in the hospital, he had a therapy ball instead and would get hysterical signing "jump" so the therapist would let him bounce on the ball.

He caught on quickly to the signs. It was amazing when he was in the hospital for a procedure. The nurse had to draw blood. Tommy looked at me with tears in his eyes and signed "hurt". That was an elating, heartbreaking moment. But that was not the best sign he ever learned. From the time Tommy was teeny tiny, Matthew had been my helper. We had a routine every morning for getting our day with Tommy started. First, we layed his quilt on the living room floor and started gathering supplies and medications. A small basin of water, a change of clothes, things to clean and change his trach ties and a bean shaped pillow for Tommy's neck and shoulders. Once everything was in place, the two of us moved Tommy and his trach collar and tubing to the living room. We started at the top (trach) and moved our way down (diaper) until he was clean and dressed. This usually took about 15 minutes and Tommy needed to be distracted so I could change his trach ties without his trach coming out. Matthew would sit behind Tommy on the floor so Tommy would arch his back and look behind him (he had the pillow under his shoulders, so he was seeing Matthew upside down). Matthew would talk to him, sing to him, and hold his hands if he got to grabby. Matthew would sign to him "I love you" by crossing his arms over his chest. He did this every single day for months and months and months.

And then it happened. Tommy signed "I love you" back to Matthew! This was about the same time he figured out to give kisses and hugs too, so we know he knew what he was saying. Perfect love. We had settled into a wonderful routine. Our days were filled with chaos, therapy, doctor's appointments and love. If I could have one wish, it would be to live in June, 2008 forever. It was the happiest time of our lives.

Tommy's Story~ His Voice!!!

2010-02-04T23:53:00.000-05:00

I could write a long blog about what it was like when Tommy got his stents out and started using a Passy Muir Speaking valve, but instead, I'll let you see for yourself.

The first time we heard his voice

The first time we heard him laugh

Finding his voice

Saying "ahhh"

Rawr!

The day I heard LOTS of noise and couldn't figure out why...He learned to do this

Loving the sound of his voice

And finally...the day that brought tears to my eyes.

Tommy's Story~ Tracheal Reconstruction and the Unexpected

2010-02-03T22:56:00.004-05:00

In April, 2008, Tommy was 19 months old. His heart was holding steady and his lungs were slowly improving, so the decision was made by his doctors to begin a many step process to getting Tommy's trach out permanently. Tommy was given a round of antibiotics at home to keep him well and then he was admitted in late April for a procedure called a laryngo-tracheoplasty, or LTP. It's sometimes called an LTR for laryngo-tracheal-reconstuction.

Tommy was taken to the OR and his ENT harvest a small piece of cartilage from Tommy's ribcage. Then, he lasered out all of the narrowing (stenosis) in Tommy's airway. The cartilage was inserted as a stent to keep the airway open as it healed.

The reason Tommy needed this surgery was because when he was an infant and could not make it off the ventilator, the frequent removal and reinsertion of the breathing tube caused his fragile airway to scar shut above his vocal cords. The extent was not known until a month after his trach was placed. There are 4 grades of stenosis ranging from mild to 100%. Tommy happened to be a grade 4, 100% closure. He had no airway at all other than his trach. This is one of the many reasons we were so diligent with his constant care and why I never left his side. A plug of mucous or accidental removal of his trach would have been a very sudden death by suffocation. Not something I was willing to risk.

Tommy spent two days in the hospital, with the first night in ICU for observation. The next morning, he was playing with his IV tubing so I had to go find him a toy before he got the idea to bite through it. He'd done that with his feeding tubing so I knew he was quite capable. We got moved to the cardiac floor that afternoon for another day or two of recovery. My Mother in Law had come to stay with us for a while, and was with me at the hospital. We took turns with him in ICU due to their no sleeping at bedside policy. His recovery was really amazing. You would have never known he just went through surgery. He was up and playing just 24 hours later.

Tommy's surgery was on a Friday, and by Monday, he was ready to come home. We all went out to dinner as a family and enjoyed being together, but something wasn't quite right. My husband, Rob, had been feeling ill for a while. He couldn't breathe when he slept and had taken to sleeping upright on the living room couch. That evening, he told us he thought it was time to see a doctor because it hurt to breathe. We discussed going to his doctor the next day but in the end, he thought it would be best to go to the emergency room. My mother in law was quite capable of taking care of Tommy's needs and our other boys, so she stayed with them and we left for the ER.

When we got there, every couple of steps, he would stop and gasp for air. I tried to get a wheelchair, but he insisted just to give him a minute. What should have taken 2 minutes to walk from our car to the door took 10. I told the nurse that my husband was having trouble breathing and chest discomfort. Up until this point, everyone thought he had a nasty upper respiratory infection because he was also coughing quite a bit. He was taken straight back and put on a pulse oximeter (that is the little flashy light that goes on your finger..it measures the amount of oxygen in the blood). His oxygen was only 94. Red flag number one. After describing his symptoms, he was taken to a room right then and there and the doctor ordered an EKG. Red flag number two. He was put on a heart monitor and his heart rate was well above 300. Red flag number three.

It only took 10 or 20 seconds for the EKG to run and I overheard the tech whisper "Afib". I started cursing like a sailor under my breath. My husband was in serious trouble, but I couldn't let him know. Perk of having a child with a heart defect is knowing anatomy and terminology of the heart. I didn't have to hide it for long because the doctors began flying into the room. They got right to the point. He was in congestive heart failure and atrial fibrillation. In other words, his heart was not efficiently pumping and the top two chambers had begun to quiver rapidly instead of beat. We were told if he had not come in that night, he would not have come in at all. The doctor gave him two days to live without intervention.

Rob was admitted to MUSC's new Heart Center. The program wasn't new, just the building. It was state of the art and he was in very good hands. He was put on medications and oxygen. He lost 20 pounds in fluids in the first 24 hours. He was given medications to keep off the fluids, another to slow down his heart and try to regulate the beats, and blood thinners. He was diagnosed with sleep apnea the moment he fell asleep for the first time on the monitor. His oxygen levels were about 86% when he was sleeping. The sleep apnea is what damaged his heart.

He had head to toe ultrasounds looking for blood clots and finally after three days of not being able to successfully control his heart with medications, he went for a trans esophageal ultrasound. They looked at his heart through a probe placed down his throat. When the all clear was given that he did not have a clot, his doctors stopped his heart and shocked it back into regular sinus rhythm. He spent a total of two weeks in the hospital. I stayed every day with him and my mother in law brought the boys to visit every day. We hooked Tommy up to the wall oxygen next to his daddy so they could stay as long as they wanted. The staff encouraged family being around to improve recovery and spoiled the boys with ice cream.

I did Tommy's trach care at the hospital. I had access to everything I needed and all the oxygen we could use. His incision did look a little off, but it turned out to be okay after a few days. I am so glad my mother in law was able to be there. I don't know what I would have done with Rob in the hospital and Tommy recovering as well. It was a very hard two weeks. Rob spent another two weeks at home before going back to work on light duty, but things were different. Life was more precious.

My mother in law had to go back to KY to her job, so we were alone again, both of them in their own kinds of recovery, both related to their hearts and their lungs. Rob's heart will never recover. CHF is a progressive disease. It can be treated, lifestyles changed to accommodate, and medications to control the symptoms, but he will never be "healed".

Tommy's recovery was much easier. About three weeks after his surgery, we would head back to the hospital for the stents to come out and we would find out how his airway looked..

Tommy's Story~~Our New Normal

2010-02-01T03:35:00.004-05:00

Our New Normal was filled with oxygen tanks, noisy, hot machines, and not going anywhere without knowing how long we would be gone so we knew how many oxygen tanks to take along. It was filled with not only therapies, doctors visits with his cardiologist, ENT, pulmonologist, and pediatrician. There were flu shots, immunizations, and Synagis shots. It was also filled with a hospital stay once a month for various reasons at what would fondly be called "Chez MUSC".

We begin with September. A beautiful month and time for Sweet Tommy to turn a year old!

How do you celebrate a birthday safely with other people (and their germs) and blow out a candle while on oxygen? Luckily, living in the South, the weather was beautiful enough in September to have an outdoor birthday at a city park. We counted out oxygen tanks and loaded them up in our van so we would not run out. Each tank lasted him about 45 minutes to an hour. His stroller was loaded down with tanks, suction machine, and his goody bag of extra trach supplies. We put a party hat on him and he wore it the entire day. He knew it was his party, despite the other family we were celebrating along with and the plethora of people all around.

When it was time for cake, we gave him his very own little cake to play with. As for a candle, no fire around the oxygen. A friend made us a birthday candle with an LED so Tommy could have a candle for his cake. It was awesome! After singing him "Happy Birthday" and showing him how to touch the cake, he went for it. First one finger, then another, then his hands. Tommy was not a mouth eater, so imagine our surprise when he stuck a finger in his mouth and tasted the chocolate frosting. A moment later, he tried to wipe his eyes and ended up smearing frosting all over his face. He laughed and laughed. It was the best birthday ever.

After his birthday, we settled into our new sleeping arrangements. Or shall I say, lack of sleeping. I had moved out of our bedroom and began sleeping on the couch to be next to Tommy. I slept with one eye and one ear open at all times. The slightest noise woke me. I woke up typically twice a night. Once to refill his feeding and once to suction. If it was raining, I was up and down all night suctioning his trach. There was no sleep, just naps. Matthew and Brandon were home as well. I needed them to be. School is a germy, dirty place. I could not risk Matthew bringing home a virus to Tommy so we began to homeschool him. Matthew was also good at fetching things while I tried to change a diaper, good at holding Tommy's hands and distracting him while I cleaned his trach, and an extra set of eyes so I could run to the bathroom. In between Tommy's feedings, medications, therapies and hospital visits, Matthew and I did lessons.

October was a wonderful month. We tried to do everything a normal, secluded family can do. We trick or treated, we went to dinner and sat wayyyy in the back away from everyone and we went to over to friend's homes. Depending on how long our stay was, we either took tanks or brought the concentrator.

November landed Tommy back in the hospital for 2 weeks with Influenza type A, despite having the flu shot and the booster. He couldn't be at home because our concentrator could not deliver the amount of oxygen he needed. He also needed several breathing treatments a day. This was Tommy's second Thanksgiving. Both of them were spent in the hospital. I had a lovely turkey dinner provided by the hospital and another brought from home. We made it home in time to prepare for...

December was Tommy's surgery to bisect the muscle in his esophagus that prevented his swallow. Following our release, we came home to be readmitted December 30 for a bad cold. We were able to come home on New Year's Eve, and that night, Tommy got to ride home in a forward facing carseart for the first time, since we found he finally weighed 20 pounds.

The end of January and beginning of February brought another hospital stay, this time in the Pediatric ICU. Another bought with the flu, but this time it hit him really hard. He was one sick little fella, but he pulled through and was able to have a heart cath at the end of February. Of course, we were terrified of the results.

The news was there was improvement! His heart was stable and his shunt wide open, so we started down a brand new path. Pushing forward to getting out his trach.

Tommy's Story~ Another Heart Surgery

2010-01-27T22:16:00.003-05:00

Tommy was admitted to the PCICU. There had been talk about sending him home on oxygen if he could be weaned down to 35%, but he never did manage to get down that low. His sats hovered in the 60's while on 40% oxygen. He was lethargic and blue. I finally told his nurse I wasn't taking him home until a decision was made and a plan worked out. I stayed with him night and day, sitting beside him, talking to him, whatever I could to be close to him. I slept where ever I could find a reclining chair or on the couch during the day when the Ronald McDonald Room was open. Once, I tried to sleep on the floor of the chapel because there was nowhere else to go.

I lived barely 10 minutes away. I could have slept in my own bed every night, but I could not leave him! Every day, the doctors rounded and I watched Dr. Bradley (his surgeon) walk by us. I asked the nurse when he was going to decide what to do about Tommy. She said that Dr. Bradley does not make decisions lightly. He considers every possible outcome and will not just jump into it unless he was certain. She assured me he knew how sick Tommy was, and that he wasn't ignoring me. Our second day on the floor of the PCICU, Tommy was moved to a room instead of just a bed on the ward. He didn't leave the floor, or even the PCICU, just where he was sleeping. It meant I could watch tv, and have a bathroom instead of leaving the ward and coming back. After 4 days of only leaving his side when it was absolutely necessary, Dr. Bradley walked into our room on Thursday morning.

He said "Let's try the Glenn." I thought his lung pressures were too high, but he told me Tommy had been on medication for 4 days and there was the possibility that his pressures could have come down enough for the surgery to be successful. I had a lot of questions, but the big one was what happened if the surgery didn't work. The answer was easier than I thought. He could reverse the surgery if it wasn't working for Tommy's body. Really? I had no idea that was possible! So at 5 a.m. the next day, Tommy would be headed to the ER. And I would be alone again. I could not bear the thought!!!

I had become close with another mom in South Carolina who's daughter had the same surgeries as Tommy. She told me that day if I needed anything to call her. So I did. I told her I didn't want to be alone during his surgery. She made the arrangements and said she would be there. I was so grateful and I am to this day. She inspired me and gave me a reason to think everything would be fine with Tommy. She was a great friend that day.

The morning of Tommy's surgery, the nurse came to his room around 3 in the morning to start an IV so he would have immediate access once he was taken back to surgery. She gave him a medication called Versed. For the kids that Versed works for, it pretty much gets them "mellow". And when I say mellow, I mean Tommy was stoned! All week, he had been cranky, sleepy and just not himself. After the Versed, he began to look at us strangely. As the nurse inserted the IV, Tommy began to laugh hysterically. I will never forget that. I took pictures of the little giggle box as he was prepped for surgery.

After Tommy was taken back, my friend, Anne, arrived. She bought me breakfast. Had to remember to eat and take care of me. The hospital gave us a pager. Once an hour, it gave us an update. We could be anywhere in the hospital and get it. We were having lunch in the cafeteria when the nurse that was calling in the updates sat near us. She called the OR and got an update for us right there instead of making us wait for the next page. He was in such good hands. Through it all, we were told Tommy was having the Glenn. Once surgery was over and it was time for Dr. Bradley to talk to us, it had been a long day. About 5 hours. He told us Tommy did very well, but he was not able to do the Glenn. Once he was in, he tested the pressures in Tommy's lungs again and found them to be much higher than expected. Instead, he put in a bigger shunt like the one Tommy had done when he was a newborn.

Tommy's recovery was right on track after that. No big surprises, no infections. Our only drawback from the whole ordeal was that Tommy could not make it off of the oxygen. His lungs had been too damaged by his lung disease and later what we would learn to be pulmonary hypertension, asthma and reactive airway disease as well. Tommy came home on 35% oxygen. Our whole lifestyle had to change to accommodate the oxygen.

Tommy started sleeping in the living room because we had a limited amount of length that the tubing could be giving him oxygen from the concentrator. It was a big, heavy, noisy, hot machine and not easily moved. We found it easier to let him sleep in the living room instead of trying to move him and all of his equipment twice a day. I started sleeping on the living room couch because we did not have nursing and his airway had to stay clear. I woke up several times a night to adjust his feeds, and to suction his trach. Life at home became very different. Tommy was stable, but dependant on the oxygen and my constant eye.

We battled the flu twice over Thanksgiving, and that would start our monthly hospital stays. Once a month, every month, something needed to be addressed.

Tommy's Story~Therapy, Therapy, Therapy

2010-01-25T03:06:00.002-05:00

Once Tommy was home and we had gotten into a routine, we started services for Early Intervention. Once you're in the system, it's fantastic, but actually applying for services was a chore. There's referrals, then an intake interview, then finally a team meeting where goals are stated and written out. It took about 6 weeks just to get therapy started.

We started out with an Early Interventionist that came out to the house to assess Tommy's needs and to see where he was developmentally. Because he was aversive to just about everything, plus a preemie and a very sick baby who had been in a hospital bed for a long time, our work was really cut out for us. We started with simple things. First up was joint compression and brushing. We would firmly rub a plastic surgical scrub brush over each of his limbs, then his back. Afterwards, we would compress and release all of his joints. Fingers, then wrists, elbows, shoulders. Hips, knees, ankles, toes. We started once or twice a day, then moved on according to what he would tolerate. We knew pretty quickly when he'd had enough. His hands would fly to his face and cover his eyes and he tried to look away.

Once Tommy started becoming comfortable with touch, we moved on to stimulation. Up until that point, at around 4 months old, Tommy hated to see any bright colors or movement. Our house had to remain as quiet as the hospital ward had been. Once we had conquered sights, we moved on to sounds and touch. Around this time, we also started physical therapy. Occupation therapy concentrated on his senses and small motor skills. Physical therapy would work on his muscles. At 4 months old, he would not tolerate any time on his tummy, roll, pull himself or sit. Simple things like reaching for a toy were major accomplishments for Tommy.

Through hard work, determination and encouragement, when Tommy was 5 months old, I was rewarded with his first smile. He learned to roll from side to side, but still hated anything on his tummy. He liked to touch only certain things. New things were met with hesitation. We all learned Tommy's cues. He would start by scratching the back of his head. That meant "I'm not so sure about this". Sometimes you could see the look in his eye that he'd had enough. As soon as the back of his hands went to his eyes, time was up.

Each muscle in his body had to be trained. He was too sick and weak to be a typical baby. There was no sitting at 6 months, no crawling, and certainly no standing. But the kid had an arm like you wouldn't believe! He could throw! At the end of his life, he would purposely throw things under the couch so he would not have to do therapy, then smile when he got the toy he wanted.

Everything was a therapy session. Tommy being held in a sling for 10 minutes was a goal. Holding a toy and passing it from hand to hand was a goal. Eye contact, touching new things, and finally, the day I had dreamed of since he was born.

Easter Sunday, Tommy was about 7 months old. I picked him up and cuddled him as I sat on the couch. He let me hold him. It was the first time since coming home that he had not arched and turned blue when I held him. I rocked him, he cuddled back with me. He loved me. He trusted me. He had finally bonded with me as his mommy. As we lay there snuggling, I wiped away my tears. Tommy had other ideas. He tucked his tiny head against my chest and fell asleep in my arms for the first time in his life. After that, there was no going back. I cuddled him every chance I got.

When Tommy was around 8 months old, we knew it was getting close to doing another heart surgery. His sats were slowly dropping into the 70's. It was summer and I wanted to take him to Kentucky to meet family for the first time. Up until then, only my mother in law had the means to travel to see us. It was a delicate arrangement. We had to plan for his medical devices to be shipped, plan for the extra supplies we would need and clear it with his team of doctors. He was not on oxygen at the time, but we still had to take a tank, just in case. Our van was packed to the gills.

It was a wonderful trip. We had two family reunions, one from each side. I will always be grateful we were able to make that trip happen. It would be the only time our families would see him. When we came back, we knew it was time for his first heart cath and hopefully, the second stage of Tommy's surgery, called the Glenn. Therapy was paying off. The night before the procedure, Tommy was finally able to lift his legs off the ground and put his feet in his mouth. He was 9 months old, 7 months corrected age (the age he actually was if he had been born full term).

The morning of the heart cath came. We took him to the day surgery room and they started the typical things for a procedure. Temperature, blood pressure, pulse ox. Tommy's oxygen saturation levels were very low. Mid 60's, and he was very blue. I was told pending the outcome of the cath, to be prepared for heart surgery very, very soon. Within two weeks, if not sooner. It was time.

Tommy was taken back for his procedure and fortunately a room was open on the step down unit right away. I was able to wait in his room and watch tv while I waited. The nurses kept me updated. Our first bit of trouble was when I learned that Tommy heart was a bit more tricky than anticipated. He needed to be sedated. Another update, Tommy needed paralytics so that the doctor could move around his heart and not damage it. Depending how long it took to come out from under the medications would determine if he went to recovery then to his room or straight to the PCICU. I was told the doctor that did the heart cath would come to speak to me.

Dr. Bandisode walked into the room. She got straight to the point. Tommy would not be having the Glenn procedure. She started saying things like chronic lung disease, lung pressures, wait and see. I felt so cold and started shaking. If I had been told that morning that Tommy needed this surgery within two weeks, and now I was being told he couldn't have it, what was going to happen? She suggested we take him home and wait a couple of months. And what? Wake up one day to find him gone?

Rob picked me up and I told him everything. Our son had just been given a death sentence. We cried as we drove down the road, holding hands, preparing for the worst.

Pausing Tommy's story for prayers

2010-01-24T15:48:00.002-05:00

i want to take a moment to ask for prayers for the wilson family. they have just lost their son, josiah. josiah was hlhs and was recently trached. their blog is www.thewilsonheart.com.

Tommy's Story~ Recovery

2010-01-24T02:14:00.004-05:00

Tommy's recovery after his first heart surgery was far from easy. We didn't know what to expect or how long he would be in the hospital. He was just so little and fragile. Days turned into weeks. Around 3 weeks after the surgery, things got bad. First, one lung collapsed, then the other filled with fluid. He also developed an infection in his blood stream. This was all in one day. I took the first pictures of him since his before his surgery because I was afraid I would never get to take another one. He was really sick.

They turned him, sat him up, and put him in several different positions so that his lungs would drain. He got chest percussion therapy (CPT) several times a day. I learned how to do it as well. He was still on a ventilator. Finally, his lungs cleared up enough that we tried to take out the breathing tube. He lasted a few hours and went into respiratory distress and had to be intubated again. It was upsetting, but not unexpected. His swallow was making saliva pool and gag him, causing him to not be able to breathe on his own.

A few more days went by and Tommy got a little stronger, so extubation was tried again. He made it a few more hours and I was actually able to get a few pictures. Unfortunately, that time without the vent was short lived as well. The third time we all knew that the only way to get him breathing alone was a tracheostomy, but there were other things that needed to be gotten out of the way first.

Tommy was given a Nissen Fundoplication. His feeding tube site had to be moved up because his stomach had shifted with the Nissen. Since he was so little, they could not do it laparoscopically. He already had his fresh scar all the way down his chest, now it extended all the way down his stomach and around his belly button, with smaller scars on either side from where his Gtube used to be, plus chest tubes from the heart surgery. My poor baby.

Tommy was just over 2 months old at this time. Thanksgiving marked 2 months, and it was now early December. Everyone was pushing for a trach, until someone let slip to me that Tommy should have an MRI to rule out a reason he wasn't swallowing or breathing on his own. This was my first time venturing into territory where the doctors figured out I was not just another mom being told what to do. I came home and began researching what I knew about Tommy and why an MRI would be necessary. I found the term Arnold Chiari Malformation type 2. This is also the time the doctors learned not to send a resident in my direction.

A couple days before Tommy was to have his trach done, I began to inquire about the MRI. Everyone agreed it should be done, so I was upset when they scheduled the trach surgery, but not the MRI. Tommy's nurse called a resident who fumbled over what was happening and I made him call the attending neurologist at home. I asked him why Tommy wasn't having an MRI to rule out ACM before they did the trach in case he needed a decompression. Silence. Then finally, "Just who exactly told you we were looking for ACM?" I told him, "Nobody, I figured it out myself, but that is why he's having the MRI, correct?" More stunned silence, followed by "Yes." He said he would call ENT to straighted it out. I could hear the gears turning in his head over the phone, wondering how I figured it all out, and on top of that, correct.

An hour or so later, I got a very agitated call from Tommy's surgeon. He explained to me that in order to have an MRI that Tommy could not have any lines in his heart. He also explained those lines were causing Tommy to get another serious infection and they had to come out immediately, but in order to take them out, Tommy had to be able to breathe on his own. A trach had to happen no matter what, so I consented. I think he (and every other one of Tommy's doctors) realized that I knew my stuff and I wasn't letting them run the show. I was a very informed mom who could stand toe to toe with them. They knew from that point to stop sugar coating it and give it to me straight. Tommy got his trach and his MRI a few days later. It was negative for ACM.

Once Tommy got his trach, the fun began. Really, no sarcasm intended. I had not held my sweet baby since the day before his heart surgery two months before. The day he got his trach, I rushed to the hospital and the nurse placed him in my arms. I held him for about 2 hours. I held him until my arms were numb, then just kept holding him. I was in Heaven. His lines came out the next day and the infections stopped. Rob held him for the very first time.

We started rooming in with him to learn all of his new care. We had to learn not only to feed him with his pump, but to dose out and correctly give all of his medications, how to care for his trach, learn to clean it, change it out, suction it, change the ties, what to look for, oxygen requirements, humidity settings, etc, etc, etc. Oh, and how to change dressings, assess his color and demeanor so we knew how his oxygen saturations were doing without the aid of machines. Then there was the regular old baby stuff on top of it. Except my baby was silent. His body shook and he turned purple as his face contorted but he didn't make a sound. He would need me to keep a visual eye on him 24 hours a day to be sure not only was his oxygen okay, but that he was breathing and his airway was clear. He had no way to communicate with me. A baby has certain cries that their mother learns. I didn't have that advantage.

A few days before he was to come home, we had him circumcised. To add to our already complicated plethora of medical chaos, the procedure went wrong. I should say, the procedure itself went fine, it was afterwards that went wrong. We had been rooming in with him in the PCICU and we finally had gotten a private room on the step down floor. He had the procedure that afternoon and that evening we moved. As his nurse picked him up to move him from crib to crib, we found the bedding soaked in blood. His circumcision was bleeding out. We called the surgical on call to come check it. He was "fine", but he had developed a hematoma (blood clot) and it was bleeding because he was on blood thinners for his heart. She had to apply pressure to stop the bleeding. After about 45 minutes in finally stopped. We had to keep his little boy parts wrapped in Vaseline coated gauze to keep it from getting irritated and bleeding again. It took a week to heal and Tommy developed a unique talent for peeing out of the right side of his diaper. I would find him soaked only to change him and find a dry diaper. Its the little things that are funny now.

Finally, on December 13, 2008, after 79 days in the hospital, our little hero made it home for the first time. It was the most amazing, scary, happy, emotional time. I immediatly put his car seat under the Christmas tree and took his picture. He was my gift. The second day home, his apnea monitor went off. The alarm scared him awake and it corrected itself. I don't think I recovered so easily. Tommy slept in a bassinet next to our bed hooked up to humidity for his trach and his feeding pump. I learned to "hear" him and learn what he wanted and was able to wake up at night. He was hooked to an apnea monitor as well. During the day, we moved him to a bassinet in the living room. His feeding pump was portable and he didn't need the humidifier, so we had the freedom to move all through the house. Not that we did. It was all very overwhelming.

We soon fell into a routine, but something was off. Tommy would not let me hold him. He turned blue and arched his back when I held him. I knew something wasn't right. He had started it before we left the hospital. I showed everyone. I was told everything from "he's not used to the trach" to "he's just wiggly". After going through respiratory, cardiology, and ENT I took him to the pediatrician and told him what was happening. More hemming and hawing, so I picked Tommy up and put him in his arms. Tommy arched and turned blue. The pediatrician turned white as a ghost and handed him back. An hour later, I had a referral in my hand for occupational therapy. Tommy was diagnosed with Sensory Integration Disorder. In a nutshell, he had not had enough human touch in the first few weeks of life because he was in a hospital bed on a ventilator and we couldn't hold him. He learned to self soothe. He also learned that if he was touched, it usually hurt. We had to retrain his senses that touch was good.

So begins our journey at home with occupational therapy, physical therapy and early intervention.

Tommy's Story~His Heart

2010-01-22T01:17:00.003-05:00

On the morning of October 20, 2008, Tommy was one month old. I called the Cardiac step down to talk to his nurse about him to see how he did through the night and how he was feeling, since he'd had the botox and was in a new place. She told me he was a little fussy and she had him in the nurse's station in a swing. Awwww! His first time in a swing! I was more sad I was missing him be fussy than being in the swing. He was a quiet baby and I think I had only heard him cry once or twice since he was born.

The afternoon went on and the phone rang. Tommy's nurse said that his sats weren't that great so they were going to give him a little morphine to start an IV. She made it sound like everything was okay, he just needed a little fluids. Being a new heart mom, I didn't really know what to expect or what was actually happening. The phone rang again a short time later. Again, it was the nurse. Tommy had an adverse reaction and his breathing became very shallow and they were giving him medications to reverse the morphine. She said to expect his heart surgery sooner than later and that Dr. Bradley wanted to speak to me about it.

It would be about a year later while Tommy was admitted for one of his many stays that we would have the same nurse. She would tell me what she couldn't tell me that night. Tommy had crashed and they almost lost him. It was much, much worse that I had ever been led to believe.

Dr. Bradley got on the phone and we talked for about 10 minutes about what was happening with Tommy. We discussed how the surgery worked and how he would be doing it. Lots of chit chat on my part. Just being an informed mommy. He asked me for consent, which I gave. Cool, just getting it all in order. I asked him what day he was doing surgery. He said "We start at 6". I looked at my clock. It was 5:20!!!! I hung up, numb. I called Rob. No answer. I called my best friend. Her phone was messing up and she couldn't hear me. I was shaking all over and ready to cry.

Rob worked for a company that installs fire alarms. They worked in the field all day long and the office closed at 4. I said a silent prayer and dialed the office anyway. I let it ring and ring and ring. Finally, somebody answered. Through tears I tried to explain who I was. I told them Rob wasn't answering his phone and our son was about to go in for emergency heart surgery. I told them he was with John. Turns out there were several Johns working there. I narrowed it down by describing what I knew about John and they figured it out from there. I could hear the man I was talking to start speaking to someone in the background. They managed to find John's cell number and call him. Through the four of us, Rob got the message to come home. Now.

They had been about 30 minutes out of town on the side of the road with a flat tire. When Rob got on the ground to change it, he had bumped his phone and caused the sim chip to come loose. Once he had it fixed, he called me and I told him what was happening. I would later find out all they had told him on the phone was to go home and take off as much time as he needed. That was all. I made it to the hospital around 6:30. I never got to see Tommy, he was already in surgery. Rob took the kids to my friend's house and she was supposed to meet me at the hospital, but her husband was running late getting home with their car, so everyone was just stuck where they were.

I went to the PCICU and was taken to their waiting room. It was after hours so Guest services had left. I was instructed that all updates would come to the phone in that room, and was left completely alone. Completely Alone. No support. Nobody. Just a few magazines and my thoughts. My son was having open heart surgery, I didn't know what was happening, Rob was taking care of our kids, my friend was waiting for her car and I was in that room where the quiet was so loud it hurt my head.

I remember getting a couple of updates, but don't remember much. I was in shock. Around 8, my friend finally made it. She had brought food with her. I had forgotten I hadn't even eaten since early that morning. I was about to make dinner when the phone had rang at home. There were signs all over the room stating "no eating", so the food sat. Finally around 9, we got an update that he was doing well, so I took the chance to tell the nurse on the phone that we would be going to the cafeteria to eat for about 30 minutes so we wouldn't miss any more updates.

We went to eat and I felt so much better that I had gotten a good update, had a full tummy and someone to lean on. We went back upstairs to the waiting room. The door was locked and the lights were out! I barely knew the hospital, didn't know where to go, who to call and was in a panic. A security guard that I had become friendly with walked past. I told her Tommy was in surgery and had been told to wait in that room. She opened the door for us. I was so grateful to her! About 10 minutes later, the original woman that had left me alone in that room came flying in screaming at us! The waiting room CLOSED at 9 pm and we were NOT to be in there. That was it for me. I'd had enough. I told her that until my son was out of surgery, I was not leaving. She told me to go to the adult waiting room down the hall. I refused and she stormed out.

I got a phone call shortly after telling me that Tommy was having a hard time making it off the heart lung machine and they were going to try another pass. Heart lung machine? This was serious! It hadn't even crossed my mind he'd be on bypass! An hour later, she called back to say he was fine, on his way back to PCICU and Dr. Bradley was on his way to speak to me. Crazy lady came to try to kick us out again and I told her Dr. Bradley was on his way. She told us fine, but after we spoke to him we HAD to leave. Whatever, Crazy lady.

I don't remember much about what Dr. Bradley said to me, except he looked very unsettled. My friend said he just looked tired. It looked like concern to me. I do remember him telling me that the first two days were critical. All I wanted was to see my baby. He was 5 pounds, 4 ounces, one month old and had just spent the last 5 hours having open heart surgery on a heart the size of a grape. I wanted my son! I was told they were getting him settled, it would be about 45 minutes.

As we left the waiting room to head down the hall to the adult ICU waiting room, the doors to the PCICU swung open as we passed. I saw a baby surrounded by several people, covered in lines and wires. I felt like I was looking at something I was not supposed to see and hurried past. 45 minutes dragged on and we were finally allowed in to see him. The baby I had seen had been mine. It was my son covered in lines and wires, still surrounded by people. Dr. Bradley sat by his bed observing everything. I was impressed! The surgeon who had just saved my son's life sat next to him like he was an old friend watching over him and protecting him. Amazes me to this day.

We scrubbed up and walked into the PCICU for the first time. Tommy was sedated, paralyzed and on a ventilator. He was covered to his chin with a blanket. His nurse explained everything to me. What every machine did, what every line meant. I asked how his stitches looked. He didn't have any. His poor body was so swollen that he had a dressing over his open wound. Once the swelling went down in a few days, they would close him up. I am not one to shy away from anything and I asked to see. She pulled back the blanket.

Thump.
Thump.
Thump.

My son's heart beat before my very eyes beneath the yellow iodine dressing. I couldn't see the actual heart, but I did see the beats. Wow. I knew in that moment, looking into my son's chest that we could face anything. There would never be anything so wondrous as being in that moment. I became so strong for him right then and there.

The easy part was over. Now we would face the recovery.

Tommy's Story~Rocky Start

2010-01-20T08:03:00.003-05:00

Tommy settled into the NICU and I settled into my recovery room. I had the desire to breastfeed him because I needed him to have every benefit in life. I had never breastfed before and had no idea what to expect. My body was a hormonal mess. I was supposed to still be pregnant and now my body was trying to play catch up. I had a lactation consultant come help me set up with a pump and gave me a chart. When I wasn't sleeping or trying to pump, I was going to see Tommy.

One of those times, he was about a day old. It's all really a fog and felt like a dream. I was standing next to his crib with his nurse across from me. We were talking when she stopped me. She called another nurse and asked her to verify if she could count respirations. She couldn't. Tommy had stopped breathing right there in front of me. An entire team swooped in, surrounding him. I remember backing away, trying to stay out of the way. The grandmother of the baby across from us put her arm around me spoke words of comfort. I don't remember them. I wasn't there. I was in shock. In reality, it was barely 5 minutes from beginning to end, but it felt like eternity. I was told some preemies just forget they are supposed to breathe. Tommy was put on CPAP.

He was on CPAP for a couple of days and had no more apnea episodes, so he was moved to a nasal cannula for just a little boost of oxygen, just to keep him comfortable. When he was 5 days old, I got double good news. Not only was I going to get to hold him for the very first time, I was going to give him his very first bottle! I was still pumping and dropped off every day. He wasn't very coordinated with the bottle and most of it just ran out of his mouth. Nobody was concerned because his suck/swallow/breathe reflexes were very new and sometimes it takes a few days to get it down. I loved holding him, but it took a team to get him to me. He had leads, wires, and a PICC line, plus a feeding tube and the nasal cannula. They put a pillow in my lap so I could rest my arms, then wrapped him in several blankets, held the lines to one side and moved the entire mass to me.

My mother in law took lots of pictures for me, but the light in the NICU made it hard to get many good shots, and some of that time, he was under bilirubin lights being treated for jaundice. I have lots of pictures of him bathed in soft, blue lights.

He was so small that his diapers were the size of a deck of cards. They were called Wee-Pees.

The hardest thing I ever did was get discharged from the hospital. I had it all under control until I got in the passenger seat and shut the door. I couldn't help but cry. My mother in law stayed with us for about two weeks. She was amazing. While I was bedridden in the hospital, she came and took care of the boys so Rob could work. She cleaned my entire house and used part of her inheritance to buy us a dishwasher and a new refrigerator with a water dispenser in the door for the always-thirsty Brandon. I settled in at home and tried to pump. I never did get much and what I did get took hours. After 3 weeks, my milk dried up. I blame it on stress.

When Tommy was 6 days old, he was moved to the Special Care Step Down Nursery. It's a place for stable, but premature babies. It's a small place with just six beds and two to three nurses on a shift, depending the number of babies. Tommy's nurse tried to feed him on two separate occasions and both times, she noticed he had a lot of trouble and the milk pooled in his mouth and he didn't swallow. A swallow study was done and then a scope. We found out that Tommy had a little secret. He couldn't swallow. He was diagnosed with cricopharyngeal dysfunction. The easiest way to describe a swallow is it is a series of squeezes. Each muscle in the esophagus grabs and squeezes, pushing the food down until it reaches the stomach. There is a muscle at the very top of the esophagus that begins the swallow called the cricopharygeal. It's the one that actually "captures" the food. Tommy's muscle worked sporadically. It opened when it wasn't supposed to and stayed closed when he tried to swallow.

Tommy's dysfunction was congenital, meaning he was born with it. Most cases of cricopharyngeal dysfunction are seen in adults who have had a stroke or an accident. To be born with it, meant Tommy might have a genetic birth defect and blood work was ordered to test for DiGeorge syndrome. It took about 6 weeks to confirm he was negative. Now his doctors were REALLY puzzled! Idiopathic congenital cricopharyngeal dysfunction??? No known cause??? Tommy became the "IT" boy of MUSC. As it turns out, this very diagnosis was the specialty of Tommy's ENT and Tommy would be one of his first patients in his new Airway and Aspiration clinic at the hospital.

Since Tommy was unable to swallow, he had surgery to put a tube directly in his stomach to feed him, called a Gastronomy tube, or Gtube for short. Tommy would get fed a special formula fed through a pump to the tube in his tummy. Saliva blocked his airway causing his oxygen saturation levels (sats) to drop. We had to learn how to use a machine to suction his mouth and nose to clear his airway. Tommy hated it, but we were quick and he settled down fairly quickly.

When he was three weeks old, talk started about bringing him home to grow before he had heart surgery. We rushed out to buy a carseat and stroller to hold all of his new gear. He would need an apnea monitor, a feeding pump, a suction machine, and IV pole to hold the feeding pump and portable oxygen. We were trained on how to use all of the machines and learned CPR. All that was left was a carseat test. Tommy had to be able to sit upright in a carseat for a determined length of time without his oxygen dropping. He wasn't passing, so a chest Xray was ordered. His lungs looked "wet" on the xray. The day before he was scheduled to go home, the decision was made to not only keep him, but to move him to the cardiac stepdown unit for monitoring. We were disappointed, but knew we had to do what was best for Tommy.

Dr. White, his ENT, gave Tommy injections of Botox to his crico muscle. In some cases, this had worked to paralyze the muscle in the open position so he could swallow, but it takes 3 days to find any results. He would be one month old in just 2 days. He was in a private room, so I spent a lot of time over the next couple of days holding him and taking pictures. He never cried. He was a peaceful, sweet baby.

That's why when the nurse called me telling me he was fussy, it was unusual.

Tommy's Story~ Crashing into the world

2010-01-20T03:02:00.004-05:00

I was 30 weeks pregnant and finally enjoying feeling pregnant. I was having a son that decided to name Thomas, after a good friend of mine. We picked the middle name Lee, because it is Rob's middle name. We decided to call him Tommy because, well, Tommy Lee happens to be the drummer of Motley Crue and Rob and I are huge fans. It's true! We named him Tommy Lee on purpose. Ironically, after he was born, we tended to call him Thomas more than Tommy. Not sure why that happened. But I'm getting ahead of myself. On with the story.

I was on the computer using instant messenger with a friend. We were trying to keep her phone lines open so her daughter could call. I got up to use the bathroom. Not ten minutes later, I felt wet. I knew my bladder was empty because I just went. I was annoyed that I had somehow managed to wet myself. I went to the bathroom and discovered my water had broke! I went from laughing and enjoying being comfortably pregnant to being terrified. My water had broken early with both Matthew and Brandon, but they were both 3 weeks early, not 10.

I grabbed one of Brandon's diapers and put it in my underwear and screamed for Rob. I quickly typed to my friend that my kids were on the way to her house as soon as Rob dropped me off at the ER. I called the maternity ward to explain what was happening and who I was. This was very, very serious. My water had just broken with a baby who would surely die of his heart defects if he was born that night. Half way to the hospital, I realized I didn't know where I was supposed to be going. It is a big University hospital with several entrances. They told me where to meet them and I was greeted at our car with a wheelchair and escort.

I was taken to an exam room where the nurse said if I had ruptured, infection was our greatest threat, so she would not be doing an exam. Instead, she did a litmus test of the leaking fluid and confirmed it was indeed amniotic fluid and by the amount, I had indeed ruptured. I was rushed to a room where I was hooked up to antibiotics, given steroids for the baby's lungs and was hooked to a monitor. Miracle of miracles, I was NOT in labor! Our greatest challenge instead was that I was a diabetic. The steroids pushed my blood sugars through the roof to the point I needed an insulin drip. Once an hour for 48 hours, I groggily stretched out my finger to be pricked to test my blood sugar. 48 sticks in 1 finger. We could have used others, but after the third stick it was numb anyway.

Dr. Shirali came to see me. He told me he had reviewed Tommy's echo and not to worry, that his heart would be able to hold out for a while after he was born, so we wouldn't need to rush surgery. That was a huge relief. I transferred to the antepartum ward and was put on complete bed rest. I was responsible for my own care, but had nurses on call if I needed them. It allowed me to rest because there were no 4 a.m. vitals. I took my own medications, my own blood sugars and stuck myself with my own insulin needles. I also took my temp every morning and night and recorded it. I was allowed out of bed for a potty break and a 5 minute shower.

My amniotic fluid continued to leak, but I had an ultrasound and a non stress test every day. As long as I stayed hydrated, my body continued to make more fluid. Our goal was to get me to 35 weeks. I didn't make it. On the night of September 24th, my back began to ache and I could not get comfortable. The next morning I went to the bathroom as usual but soon realized my amniotic fluid was more red than normal. A sign I was actually bleeding again. I called my nurse who alerted my doctor. The bleeding slowed on its own and I was told I was on high alert, and if any small thing became out of order that we would induce. I folded a towel through my legs and got comfortable in bed on my side to rest. My friend brought Brandon to see me and we talked about an hour.

When she left, I got up to use the bathroom and found the towel soaked. My doctor told me she felt Tommy would be safer on the outside than the inside and we would induce. I asked to call my husband and mother in law and asked what day we were inducing. She looked at her watch and told me to hurry up with the calls, we were going NOW. As luck would have it, I could not get through to anyone, so I started leaving messages. Rob called back and told me he was on the way.

I was induced at 33 weeks. The pitocin was started at 4 p.m. Sometime around 4 cm I decided to have an epidural even though I had never had one before. I got stuck in the spine 3 times, trying to get a spot that didn't feel like I was being split in half. I finally didn't feel the third needle and the medication was started, except I kept feeling my contractions and never got numb. For the next 3 hours, I squeezed Rob's hand. I could only lay on my side because there were probes attached to Tommy's head and moving spiked his heart rate. I was put on oxygen to help him. I felt every single contraction starting in my hips, up my back, around my stomach, then down my thighs. It was decided that I would deliver in the OR because Tommy was such high risk. I was to be moved at 8 cm.

I could only have 1 person in the room with me to deliver. Rob has a very weak stomach and nearly passed out during Matthew and Brandon's births with no complications. He passed the torch over to my friend and told me he would see me when it was over. I didn't blame him one bit! We made it to the OR and all of a sudden my body took over. I had to be cathed. I couldn't control anything and my contractions were causing me to push before I was actually ready. The doctor told me to hold on for just a minute more, that I could push at 9 cm instead of 10 because he was going to be small. That was all I needed to hear. I ripped off the oxygen mask and about 2 minutes later, my son was born.

I never saw him. He was grabbed by the NICU nurse and rushed to the adjoining room. All I heard was the most beautiful, lusty cries! I spent another 10 minutes or so in the OR and was taken back to my room, where I started to shake all over. It was the medication from the epidural leaving my system. It never numbed me, but it sure let me know it was in my bloodstream. An hour later, they wheeled the incubator into my room. There he was. He had tiny leads stickered to his chest, a line coming from his umbilical stump, and and IV. He was so little and so big at the same time. 4 pounds, 5 ounces and 16 inches long. I got to spend 5 whole minutes with him before he was taken to the NICU for his first echocardiogram. We were told we could see him in about 2 hours.

About that time, my mother in law made it to the hospital from KY and I was settled into my recovery room...right next to the newborn nursery. All I could hear were crying babies and my baby was in the next building. Very sad!

We made it up to see him, but could only go in 2 at a time. We were told that his echo showed his heart was "balanced". Even though he had a serious defect, his body had learned to compensate and he was doing remarkably well and could probably wait several months to have any surgery at all. We learned his complete heart diagnosis. Double inlet left ventricle, transposition of the great arteries, and Pulmonary stenosis. It was also said he had a VSD, but the reality was it was so large that truly he had just one big ventricle. A three chamber heart mixing blood with oxygen and without oxygen in one spot. It didn't matter that his great arteries were reversed because they were dumping into the same place. The biggie was the stenosis (narrowing) of the artery that carried blood to the lungs. That would have to be opened eventually. But for now, he was okay.

We also learned that pathology had looked at the placenta and it had ruptured. Had we not induced when we did, he would have died. This would be close call number one for us. We also knew the way he manged to wiggle out from the monitors during our daily non stress tests and the way he rolled away from the ultrasound probe that he was very stubborn. Stubborn is good with sick babies. It meant he was a fighter.

Life with a baby in the NICU was starting for us.

Tommy's Story~The Beginning

2010-01-19T08:22:00.004-05:00

In less than 3 weeks, Congenital Heart Defect Awareness week will be here. The internet is all aflutter with upcoming events to raise awareness for CHD. I am no different in my efforts. My story just has a different ending. Many of you already know that ending, but not so many know the beginning. I plan to break the story up a bit, posting a little bit at a time because there is so much to tell.

So we start at the beginning.

We started talking about adding to our family near the end of 2005. I found out I was pregnant in March 2006. It was a Valentine's Day baby. At the time, I was between jobs when two companies expressed hiring me the same week. One was working as a cashier for a new hardware store opening in the area. It meant a lot of time on my feet and heavy lifting. The other was taking inbound calls at a call center. Because I was in my first trimester, I went with the call center so I could sit and take care of myself.

My first trimester was filled with spotting. Because my previous pregnancy had been high risk, I was overly cautious. My pregnancy with Brandon was a scary thing. I had a low lying placenta that caused me to bleed out if I over exerted myself, gestational diabetes, a preterm scare and finally a premature birth. When I started spotting with the new pregnancy, my mind filled with worry.

My doctor told me it was implantation bleeding and not to worry. Eventually, it tapered off and finally stopped near the beginning of my third month. By my fourth month, I decided to switch jobs and take the cashier job. It was right down the street and I could walk to work. I thought it would be good for my body to walk every day. I felt great! I took it easy on my new job. I took breaks and put my feet up and took care of myself. No lifting. Rob had also taken a new job in February and the boys were in daycare and doing well. We were a typical two income family working hard to raise our family and prepare for our next child. I was 4 1/2 months pregnant and feeling fantastic. As a matter of fact, I didn't even feel pregnant. That nagged in the back of mind, but I put it off to all of the changes in our lives. Then everything changed.

It was a Sunday. My mother in law was visiting from KY. I went to work as usual and felt fine. About an hour into my shift, I felt uncomfortable, so I took a bathroom break. I was bleeding! I notified my supervisor, who sent me home immediately. Once I was home and called the doctors, I was told as long as the bleeding didn't increase to lay down and keep my feet up and come in first thing the next morning, which I did. I had an ultrasound and baby was fine. Placenta was fine, blood work was fine, everything was fine. Except I was soaking a full sized pad in less than a minute for no reason. I came in every 3 days for another ultrasound and each time, the same thing. Nothing was wrong with the baby or the placenta despite all of the bleeding.

After the third ultrasound, the midwife told me the technician couldn't get a good look at the baby. I wasn't surprised. It took 3 ultrasounds for the tech to "think" it was a boy. He was a stubborn little thing. I still didn't feel pregnant. I was 5 months and never felt the baby kick. The ultrasounds at least let me know someone was in there. Since they could not get good pictures of him in their office, they wanted to send me to Medical University of South Carolina (MUSC) for a level 2 ultrasound on the baby so they could check his heart and umbilical cord. Goody! Another ultrasound to peek at my little guy! I took my best friend with me.

That's the day my world changed.

We giggled with excitement as the tech started the ultrasound. Stubborn baby. Would I please turn on my side. Now the other side. Could I please pull my legs up. Now down again. Lift up the tummy a little. Push, pull, twist, turn. Somethings not right. It must be the machine. Let's move you to the next room and try again. Same scenario. More turning and twisting to get the baby in a good position. Aha! She had found the cause of the bleeding. A subchoronic hematoma. More twisting and turning. Finally, two hours later, she says the doctor will be in to talk to me. Oh, and it was definitely a boy!

I don't remember anything except a man in a white coat introducing himself as doctor so-and-so and telling me one side of my baby's heart was too small and his umbilical cord lacked a blood vessel. I was to report for a fetal echocardiogram. Now. No appointment, they're waiting. Wait. What?

We drove the two blocks to Children's hospital and reported to the 5th floor. They weren't kidding. I was taken right back. I found out a fetal echocardiogram is an ultrasound of just the baby's heart. Guess what? More push, pull, twist, turn. Stubborn, stubborn little guy!! Up until this point in my life, the only things I had ever heard about heart defects was Sylvester Stallone's daughter born with a small hole in her heart that was fixed. No details, just that she would grow up normal and healthy. I'd heard of murmurs, but didn't know what they were. I'd never heard the term Congenital Heart Defect. This was my 4th child, I wasn't a newbie at this. I knew the tests, I knew the statistics for Down Syndrome and spina bifida. Why all the hullabaloo over my baby?

After the tech finished the echo, my friend and I talked. Confused and a little scared, I didn't know what to think, except where did I go wrong? Did I overdo it somewhere in the beginning? Not enough vitamins? Secondhand smoke from someone I walked passed on the street? Two people walked into the room. His name was Dr. Shirali and he had his nurse with him. How gently do you break it to a mother her child could die? He was about to show me. Compassionately, he began to explain was a heart defect was. He told me it was nothing I had done and honestly, there was no explanation why. He had a booklet with drawings of different heart defects. My baby's defect was not in that book. It was too rare. Instead, he drew me a picture as he explained.

So, he'll grow out of it, right?

So much information to take in. There were options. We could do nothing. My baby would be born and we would take him home to make him comfortable and let him die naturally. It was called "compassionate care". What's so compassionate about letting your baby die while you let it happen? We could put our son through a series of surgeries that would reroute the way his body carried his blood to give him more oxygen. The first one would be shortly after he was born. My head swam. What about a heart transplant? It was not a good option because finding a heart that small that was a match was nearly impossible. Then I was given my third option. In the State of South Carolina, legally, I had 3 weeks to decide to abort the pregnancy. At that time, I would be 6 months. I told him about my history of preterm births. He told me the baby had to be born term or he would more than likely die.

How does a parent process all of this? Now I had to go home to tell my husband. He was devastated. I told him about the abortion option. Numb with grief, he left the decision to me. I started looking up my son's defect online. It took about an hour just to find out what it was. It really was rare. I read the medical statistics. I read about what to expect. None of it was good. My son would practically be an invalid for the rest of his life. I researched the abortion because I was feeling so lost and detached. I had never felt my baby move and now he had been given a death sentence. Should I just terminate and get on with our lives? I agonized over the decision.

And then the miracle that is Tommy, happened. Late in my 5th month, almost to my third trimester and nearing the end of time to make my decision, he kicked. I was pregnant! There was life in there! That little kick brought me so much hope. I knew I could never live with myself if I did not follow through with what we had started. Good, bad, life or death it was out of my hands and in God's. For the first time, I felt pregnant. I felt like I had something to look forward to. I started seeing a specialist with Maternal Fetal Medicine. I was diagnosed with gestational diabetes and was to start class in a few days to get my monitor and learn nutrition. Old news. My last pregnancy was diabetic too. Goodbye Sonic, Goodbye chocolate. I was 30 weeks into my pregnancy. Only 10 weeks to go!

So I thought.

Congenital Heart Defect Awareness Quilt Project

2010-01-13T09:44:00.003-05:00

I don't remember how I first heard of the CHD Awareness Quilt Project. It just seemed like someone was always talking about their quilt block. I thought of submitting a request when Tommy was a baby, but he was a baby, he didn't have any particular interests or favorites yet. So I waited.

After he died, I looked them up to see what it was all about and what I needed to do to get Tommy a quilt block. I filled out the form with his likes and his personal information. There's no set time for a quilt block to be made. It just depends on when a volunteer is able to get it done.

I checked the page for a few weeks and realized it was going to be a very long time and moved on with life. I thought it might be a couple of years because of the long list of names. So MANY kids with heart defects and those were only the ones requesting a quilt block! Take a look at the honor roll on their page. It's stunning to see all of those names. Every single name is a child born with a CHD. Even if you don't read every name, scrolling through the sheer volume is an eye opener.

The morning after I posted my most recent blog entry, I lay down to take a nap as I do nearly every day. When I woke up, I checked my email as usual. I was not prepared to find the email telling me Tommy's quilt block was finished and a picture was included. When I saw it, I cried. I may never know who put together the most beautiful tribute to Tommy.

On the form, it asks for the child's favorites or likes, comments, etc to help make the block personal. Tommy was all about bubbles, Nemo and the color Red. I had no idea how those three things would pull together for a quilt block, but it did and it is amazing!

Everything is done by volunteers. If you would like to donate your talent, there is a link on their page with instructions on how to make the blocks as well as how to contact them. I have seen one quilt in person and it was breathtaking. Tommy's block is not yet on a quilt, but they will email me again when it is assigned to one. They will give me the quilt number and the position on the quilt. I hope to one day see it in person. The quilts travel all over the world and are shown at CHD events. If anyone ever spots his block on a quilt, I'd LOVE to hear about it!

Here is a picture of the beautiful block made for Tommy. I want to add one more thing. Since Tommy died, I have been looking for boy angels. Most of them have been cartoonish cherubs. When I see a picture of an angel, it's usually of a little girl in flowing robes and long blond hair. I wanted a picture of a boy angel! I've come across very few boy angels that looked angelic. If they weren't cherubs, they were just little boys with wings. Not what I was looking for.

I don't know where the volunteer found the applique of the angel, but that is what made me cry. Even down to the hair color, it's perfect!

In the Dark

2010-01-11T08:40:00.002-05:00

Last night, as I tried to sleep, my mind wandered away from me. It fell to thoughts of Tommy and broke my heart all over again. I can only remember glimpses and moments, like little clips of time. I long to have minutes, hours, even days play back in my head. Last night, as I tried to make the memories stretch out into something more than a glimpse at a time, it struck me...

When August comes around this year and I am mourning the day he passed away, he will have been gone from this Earth longer than he lived on it. How can that be? Didn't he just die a few days ago? In my head it always feels like hours and years all at the same time.

I knew how sick he was when he was born. I knew what we were facing. I had prepared myself for his death so many times. Every day when he woke up was nothing short of a miracle. I had to make each moment count. I took so many pictures of him that when I put them all on disk, I have somewhere around 8 full DVDs at 4 gig each of pictures of him. Even so, when I look through them, I always wish there were more pictures. More memories.

Now that life has moved on and I have a typical job, I still keep up with other families with special needs kids. Lately, one of them has a child that may require a G-tube to eat safely. Looking back, I kept thinking how it wasn't a big deal that Tommy had a G-tube. I never understood why some people were nervous or felt bad around Tommy. He was just my kid and I was just being his mom. In all of my deep thoughts in the dark last night, I realized I gave birth to a son that could not swallow without aspirating. Could not breathe without a hole in his throat. Could not keep enough oxygen in his body without a machine. Whose heart was missing parts. Every day, I woke up and cleaned his body, along with caring for the extra holes he needed to live. I drew up medications in handfuls of syringes 3, 4 or more times a day and pushed them through a tube in his stomach. I hooked him up to a machine to give him nutrition and we went about our day and the machine softly hummed in the background. The constant buzz of the machine giving him enough oxygen to live. Counting exactly 24 links of blue tubing because any more or any less would alter the amount of oxygen he got.

Physical therapy, occupational therapy, speech therapy. Cardiologists, ENTs, surgeons, Synagis and flu shots, and monthly deliveries of oxygen and supplies to keep him alive. HOW did I do it all? How did I make the time for the medical AND the daily? I always knew his life would be short. I could never imagine him going to school, much less as an adult. My heart knew we would be lucky if he made it to 5 years old. We didn't make it to 2 years.

Could I change anything to have extended his life? Doubtful. After all of this time, and more nights in the dark like last night, I've analyzed it to death. I've read the autopsy so many times I've practically memorized it. Even though the catalyst was the bronchopneumonia that caused his body to work so hard that his heart stopped, Tommy was a time bomb.

He was in heart failure when he died. With the state of his lungs, there was no way he would have been listed for transplant. His lungs were trash. Pulmonary hypertension, asthma, reactive airway disease, chronic lung disease. Each breath was a miracle. I only wish we knew. I had prepared myself so many times before to let him go. When they told me when I was pregnant that he might not make it when he was born. When he was born 7 weeks early and I watched him stop breathing in the NICU and the crash cart came. He was barely a day old, and I was still a maternity patient, listening to the babies cry in the nursery next to my room while my baby struggled to live. Two emergency heart surgeries, both with unknown results. I'd mentally prepared so many times to let him go, but when it actually happened, I felt betrayed.

I wanted one more picture. I had my camera with me the entire 5 days he was in the hospital for the last time, but he looked so sick I didn't want to bother him with it. I was irritated at the doctors on call for ignoring me. The more I screamed for them to fix him, the more they hushed me. I was just the paranoid mama who'd been in that room too long. Guess what. I was right. There WAS something wrong with him! He was DYING! There was nothing we could have done to change that. Prolong his life a little if we'd caught the bronchopneumonia, but for how much longer? Days? A couple months? Rob has been in heart failure for 2 years now, but he's a grown man with a structurally sound heart, not missing pieces with trashy lungs.

The dark brings up such drudgery. I feel like my grief will never go away. Hot tears fell on my face last night. I want to say they fell like when he died, but truth be told, I've not had my "moment". All of this time has passed and I have been sad, angry, complacent, and numb. I've blogged, I've wept, I've lay in bed hugging his things. I've never broken down. I've come close. The tears fell for a little while as I felt sorry for myself and missed my boy, but I've never had that moment where I thought the bottom fell out and I would writhe in a pit of despair.

I always felt I should feel that way. My son died. I should have crawled in my bed for weeks and shut out the world, but I didn't. Being a blogging robot came instead. I took pity on myself and my fractured marriage and put all of my energy into that instead of grieving Tommy. Maybe that was the only way I got through each day. I could fix my marriage, I could not bring Tommy back. I think if I had not had that diversion to hyper focus on at the time that I would not have survived his death. It would have consumed me from the inside out.

Even now, I have to blog to be able to get on with my day. Because today I will go to work, come home and it will be time to go to bed again. I will lay down and turn off the lights and try to quiet my mind. And eventually, the soft images of my laughing boy will fill my mind to lull me to sleep if I am lucky.

Out With the Old....

2009-12-31T15:05:00.003-05:00

Here we are. New Year's Eve, 2009. In a few hours we will be ringing in the new year. I wishing for a year of hope and promise. I've made a couple of small changes so far, one of which is Brandon's medication regimen and the other being my hair. Okay, my hair isn't a small change. It's quite drastic! I do love it, though.

I'm liking the whole look without the glasses, so I'm considering contacts as well, but we'll see how that goes.

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I've been out of work since Sunday night. I woke up feeling feverish and not well, but I thought I could tough it out. Wrong. I made 3 hours into my shift before I had to call my boss to relieve me. I came home, ate a bowl of soup and went to bed. I stayed there for about 36 hours before I even had the strength to stand again, and even now, its rough to be up for more than 10 minutes or so. I kept a fever of 99.9 the entire time I was in bed. Once the fever broke, the coughing began. Let me tell you, I prefer the fever. Nothing like trying to use my touchscreen phone when a coughing fit hits me. I hit the wrong tab every time.

Rob was kind and took care of me while I was sick and kept the house tidy. Once I was able to raise my head for a while, we moved my laptop to beside the bed so I could keep up with the world. I have some wonderful friends on the Internet who've made me laugh until I cough until I can't breathe. Got to love a friend like that! I plan to meet up with them again later tonight for some New Year's Eve shenanigans.

Since I am home sick from work, I can't be out traipsing all over just because it's New Year's Eve. It was horrid enough taking Brandon to his appointment with his psychiatrist today, but it had been postponed three times in December, and we really needed to discuss how he is doing. The medication we had him on was adding to his aggression and compulsive behaviors and he has lost more weight that we are comfortable with from his lack of appetite, so we switched up the meds. But I digress. I was talking about New Year's...

So instead of traipsing around this evening with my wonderful hubby and kids, I will be enjoying New Year's Eve from the comfort of my warm bed and the light from my trusty laptop. The hubby and kids are headed to a family evening at church and then to a friend's for pizza making and to watch the ball drop on TV. The beauty of all of this is....

I'm going to be alone!

No kids, no hubby and complete control of the remote! I can't think of a better way to spend an evening. Okay, I can do without my lungs trying to escape my body every 20 minutes or so, but other than that, I am giddy with excitement trying to figure out which movie to watch first!

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Since I've been a very bad blogger and let Christmas slip by without posting, I wanted to add that Christmas was wonderful. Financially, I didn't think I would be able to pull it off, but at the last minute it all came together. I got the kids what was on their lists, but not their dream gifts. I was prepared to tell them Santa wasn't able to make enough, but at the last minute, my mother in law was able to get them each their one dream gift. Matthew's was a DSi, which is the newest version of Nintendo's handheld system. Brandon's was a Spiderman bike. The look on their faces was pure joy. Santa still lives on in our home for another year.

Here's to a Wonderful, Blessed, Joyful, Happy New Year!!

Christmas Spirit.

2009-12-09T07:33:00.003-05:00

In 15 days, it will be Christmas. I don't know how I got to this state of mind, but I'm downright giddy! Our tree is up and decorated (thanks to the boys, who always do a wonderful job) and I can't stop listening to Christmas music on the radio at work. We have a tree up there as well, and lots of garland. I went a little crazy with the garland, but that's okay because my sister went a little crazy with the outside lights!

For those that don't know, I work in a convenience store. It's owned by one person and we have just 3 employees: the owner's brother, my sister and me. It's a very laid back job. No uniforms or name tags. I usually wear jeans and a ratty tee shirt because on my shift, something gross is usually getting cleaned. We have old gas pumps outside. So old, that they don't have credit card readers! People actually have to walk in to pay me. We have a lot of regular, neighborhood customers. We get to know them and they get to know us. New customers get confused. They will begin a conversation like "remember yesterday, I was telling you...." or "you just carded me this morning!" They're stunned to realize that my sister and I are not the same person. We do resemble each other strongly. The best part is when she's there with me and someone comes in the store and does a double take, realizing there are two of us and not just one person working all day long.

For the past week at work, I've been listening to Christmas music and wearing a jingle bell necklace. When I am in the mood, I wear reindeer antlers. The customers love it! I dress up for all of the holidays. I wore head to toe green on St. Patrick's day, complete with glitter covered hat. On Halloween, I wore a green wig and a glow in the dark tee shirt. Antlers aren't really a stretch.

Two days ago, I had one of my regular customers come in the store. He shook his head in disbelief when he saw my antlers, making the comment he hadn't finished digesting his Thanksgiving dinner yet and wasn't ready for Christmas. I told him I couldn't help it, I was full of Christmas Spirit this year as I cheerfully rang up his purchase. He laughed a little and said he'd probably walk in to see my sister wearing a Santa hat. I showed him our collection to choose from for her to wear. I think he said something about us being crazy as he left. Last night he came back.

He told me he was starting to get into the Christmas spirit and it was because of me. He said he'd thought about me that day and it cheered him up and put him in the Christmas spirit. I shared with him the reason for my silliness and love of the holiday this year.

I told him, last year, my baby died. The last thing I wanted to do was celebrate anything. I was numb and went through the motions for my other kids. The two previous Christmases were difficult because we didn't have family around and could not travel because of Tommy's complex issues. I told him this year, I felt free. Free from the grief that consumed me last year and I I felt like Tommy was giving me permission to be happy. I told him I would always, always miss my son, but now is the time to celebrate and to find the normal again with the family I have left. I could see from his face that he walked out of there changed inside. Even from Heaven, Tommy is still touching people's hearts.

I haven't bought one gift yet. I usually wait until the last minute because the boy's tastes change hourly. I also have no place to hide anything. In my last update, I wrote about giving of myself to my kids for Christmas. Our family has never experienced a typical Christmas, so this year, I am trying to give them wonderful memories. I'm 38, and can only remember a few gifts I got for Christmas as a child. What I do remember is the way the house smelled when my dad baked cookies and no matter what, I had an apple, an orange and walnuts in my stocking every year. I want my kids to be excited about what Christmas means than what they can get.

Today, as I was walking the kids to the bus, Brandon asked me if he could have another surprise today. I asked him what he wanted to do after school today and he couldn't decided. He just wanted it to be a surprise! We settled on baking a batch of brownies while we color pictures and make paper airplanes. I hope when he's an adult spending time with his own kids, that he looks back to the December when he was 6 and remembers parades, brownies and coloring with mom. I hope Matthew and Brandon both feel loved more than ever this Christmas and no matter what is under the tree, they have memories of how they felt and not of what they unwrapped.

Love and Time for Christmas

2009-12-04T00:30:00.005-05:00

Christmas is coming up fast. There's not going to be much to go around, but I'm determined the boys are going to have so much fun that they won't notice the amount of gifts not under the tree. I've spent the past two days doing the most fun things I've ever done with the boys.

Last night we watched "A Christmas Story" after homework was done. We had a great time and lots of giggles filled our home. Today, they came home with big grins asking what today's surprise was going to be. Trying to keep a straight face, I told them we had to go to town to run an errand. They didn't believe me. (Of course there was a surprise!) We stopped to get a little drive-thru dinner and drove to a parking lot in town to eat. So far, so good...UNTIL...an older gentleman knocked on our car window and asked if the parade was going to go passed where we were parked. Busted. Tonight was our town's Christmas Parade. I'd been planning this for 2 weeks and I almost pulled it off. Oh well. The cat was out of the bag.

When it was time, the boys and I got out of the car to watch. I noticed the traffic was turning at the light in front of us instead of a block down, so I knew we would have to move if we were going to see. We didn't have to go far, just about a half block down. The boys were thrilled! They thought the parade was going great, the best thing they'd ever done until the first float threw candy at them. Holy Cow! You would have thought they were throwing $20 bills the way my kids scrambled the sidewalk to pick up each precious piece and shove it into their pockets for safe keeping. By the end of the parade, they had three full pockets each of candy, coupons for free cookies, pencils and Liberty crowns.

Boy Scouts, Girl Scouts, fire trucks, classic cars, horse drawn carriages, floats and Santa himself. We stood in the cold for 90 minutes as the parade slowly crept past us (with a huge gap every 5 or 6 entries). The best part was when the Salvation Army rode passed and handed out hot chocolate to the crowd. It was cold! 38 degrees at 6 pm. I couldn't feel my toes by the time Santa rode by shouting "Merry Christmas".

When we got home, we dug the tree and decorations out of the shed, I assembled the tree and strung a string of musical lights and let the kids to whatever they wanted to the tree. It looks fantastic! Tomorrow, I head back to work, so there won't be any surprises for the rest of the week.

I don't have a dime to spend on my kids right now, but I totally believe in Christmas Magic. And overtime. I plan to get them each a few small things, but there won't be any giant gifts under the tree. Honestly, if I can keep up these awesome surprise days when I have days off, then by the time Christmas gets here, it won't matter what's under the tree. It will be about the special time spent with mom and dad watching movies, going to parades and whatever else I can dream up. I have 6 more days off until Christmas, with my last day off being Christmas Eve. I'm thinking one night can be cookie baking night, and another another night we can do a fun craft to create a gift for the grandparents. We can share the story of the Nativity another and I hope I can instill in them the reason for Christmas and not the gifts behind it.

My gift to my children is me. I can't wrap my time up in a pretty bow or put a price tag on what it is worth. My kids will still expect gifts under the tree, but I am hoping their hearts will be full of Christmas love well before the day on the calendar.

A Thing Of Beauty.

2009-11-30T03:54:00.005-05:00

Changes. I'm not too crazy about them, but sometimes things need to grow and develop. Like my new blog layout. Took me for-ev-er to do it and it's not perfect, but it is pretty close to what I wanted. I found the background I wanted and knew I wanted a very personal header with a pretty border to match. It was a pain and I've been working on it for a week, but I finally got the picture INSIDE the border just like I wanted. Then the tricky part was finding a template that would not crush my youtube videos of Tommy to one side and just show a sliver of his face. Once I thought I had it right, I realized that blogger had jumbled my layout to a one column blog instead of two. More work to add new page elements, then copy and paste the old content to the new. I tried to just slide it on over to the new column, but nope. Denied!

So now, on to the reason for this post.
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On Saturday, we were in town and I asked Rob if we could stop at the cemetery. I was hoping Tommy's headstone had been placed and I'm happy to say that it had been done! A few months ago, a friend put me in touch with the Dempsey Burdick Memorial Foundation. They provide markers to families in need that have lost a child. We were chosen to receive this wonderful gift for our sweet Tommy. I urge you, if you are looking for a charity to donate to for the holidays, please, please send them what you can.

I cannot tell you how sad it was to go to the cemetery and find that the mementos we had left Tommy had been removed for mowing and dumped into the trash without notifying us. If we would have just had a moment's notice. But that cannot be helped. It's policy, and I am sure one that is practiced in many cemeteries. Matthew and Brandon wanted a stone to lay things on so that they would not be taken.

When I was contacted and told we had been chosen, I could not begin to describe how it felt. Like the final moment of closure. Our son finally had a permanent marker to let the world know where his body rests. Rob and I were given the opportunity to design the marker ourselves. We immediately knew we wanted a broken heart with wings, but what else? Many people suggested Nemo, but it didn't feel right. It HAD to be bubbles, but we had no idea how to convey that in stone.

Around this time, my birthday came around and I was sent a handmade plaque made by the sweetest, sassiest little girl I know. It means the world to me. So much so, that if you look in my header, you'll see the picture I so desperately wanted to frame with a border and use here on my blog. She and her mom got me through some tough times. They were the first people I met online when Tommy was a baby and first trached that also had a trach and heart defects. We've bonded long distance through emails, Carepages, Myspace, Facebook, phone calls and endless texts. We've been through wonderful highs (her daughter getting out her trach) to the lowest of lows. Tommy dying.

When I got the plaque, I knew immediately that it had to go on the headstone. The representative from the monument company came to our home to help us and she took pictures of the plaque to use in the design. I quit talking to everyone about the headstone around that time because I didn't want anyone to know until it was finished, and then I wanted my sweet girl and her mommy to know first. I texted her and told her to get tissues first, then sent the picture to her phone.

It's a thing of beauty.

Thank you Lexie for your inspiration. Thank you Suzanne for loving my Tommy as much as I do.

I love what the sunlight did in this picture. I think Tommy likes it.

Blogger Blahhhhh

2009-11-28T04:07:00.002-05:00

I have been attempting to spruce up my blog this evening, but for some reason, no matter what I do, the templates will not work. I hope it is a glitch that will be corrected soon. Bear with me while I try to work out the bugs.

Thankful Doesn't Cover It

2009-11-26T01:50:00.003-05:00

It's Thanksgiving. Technically. Last year, I did not know what to do with myself. We'd recently lost Tommy and we had just settled back in Bardstown. Life was hard, stressful and very sad. Rob and I were treading new territory in our marriage. I had much to be thankful for, but it was a struggle.

For the two previous years, Thanksgiving did not exist for me. Tommy lived for two Thanksgivings. Both were spent in the hospital. First, as a newborn, struggling to live after open heart surgery and all of its complications. I don't even remember how I spent the day or where I had dinner. I just remember my little guy in PCICU for his second month. The next year, we were back again. This time with the flu. He'd had the flu shot and the booster, but he still got the flu twice that season. Lots of oxygen, lots of breathing treatments, lots and lots of suctioning his trach so he could breathe. My sweet hubby brought me food and I was able to have a wonderful meal from the volunteers as well. We had a lot of love surrounding us, but it was still a long two weeks in that hospital room.

Thanksgiving has always been a fun time for me. I never miss the Macy's parade, but this year I will. Our antenna isn't working. I could walk next door to Rob's grandparent's house, but I really hoped to snuggle up in bed with my boys and watch from home in our jammies. I don't want to get and trudge across the field at 9 in the morning with cranky kids just for tradition's sake. Plus, they don't care about the parade anyway.

Thanksgiving this year is such a blessing. Rob's grandmother survived heart surgery and is up and about, better than ever. I have a good job, the kids are doing well. My marriage is healthy. I am well. Part of me will always be missing, but I know he's with me always, just slightly out of reach.

I've been putting in all nights and weekends on my job. I miss lots of birthday parties and family dinner on Sunday afternoons. I am so fortunate that Thanksgiving happens to fall on my regular day off. I spent today with Rob and the boys. We cleaned house and I made deviled eggs for my side of the family for tomorrow. We will have lunch with Rob's family and then dinner with my family. It's going to be a long, fun day. Thank goodness there is no school Friday, so I will get to sleep in. No Black Friday for me!

Thankful, blessed, loved. Tommy would approve.

Too Much!

2009-11-18T14:35:00.004-05:00

How do I explain my living situation without the whole world turning against me? Because that is what today feels like. I was called to a meeting at the school with the Resource team under the guise of offering me assistance with their programs.

Instead, I was sat in a room with 4 other people as they voiced their concerns about my family. It was a bunch of nit-picky little things that made me feel attacked and belittled. I was told Matthew's clothes look frumpy and disheveled. Funny, those are the clothes the school gave him. I was told I MUST walk my children to the bus stop each day even though I can see them from my front door or the bus driver will report me and the school will "take action". In other words, report me to social services for neglect.

I work odd hours and sleep odd hours. They are appalled that I am doing laundry at 3 in the morning, so they are referring me to someone to come to my home to help me get organinzed. People, I don't need to get organized, I need sleep! I need my kids and my husband to pitch in instead of leaving everything to me. Somebody coming to my house making lists and pie charts is not going to fix anything.

I feel like because I am not a Suzy Homemaker that I am not a good parent. Yes, my kids have issues, and I am addressing them. I don't need the school psychologist telling me that my kid's behavior is from lack of sleep because of MY job. I don't understand what they want from me, although they "sweetly" told me in writing everything that I am supposed to be doing.

I am ready to tear my hair out. I get no help at home, I'm working to support my family on just my income and I feel like all I do is work and sleep. I should be sleeping now, because I have been called into work on my day off, but I can't sleep because I'm so mad!

Their idea of help was to attack and bully me. I feel like I have to quit my job to stay home with the kids full time to make sure they do their homework, take baths and have a clean home. But then, who would provide the income? Oh wait, that's me again. My house is a wreck and instead of using my day off to clean (like I always do on my day off), instead I have been called into work. Another day not at home with my kids. I never see them.

I'm so tired. Physically, emotionally. I don't have time to do anything. I need a break, but it's not going to happen. I'm already under so much stress that I ended up in the emergency room last month with heart palpitations. I'm not allowed any more caffeine. What I need is a week. I need two days to completely rest up, 5 days to completely rearrange, reorganinze and scrub my house-without kids around to mess it up again, then two more days to recover. My job doesn't offer paid vacation time.

I have one hour before I leave for work, yet again, so I am going to attempt a nap. So far I've managed to squeeze in two short naps since I got out of work last night of three hours each. I hope when I wake up, my house is clean and I'm a size 6.

Comments

2009-11-14T13:19:00.002-05:00

Recently, I have gotten a few spam comments. For this reason, I've decided to moderate all comments from now on. Sorry for the extra step. I enjoy everyone's comments very much, but I don't like finding an ad for Viagra in a post about a sick child. Thanks for understanding and I hope everyone continues to commment.

"Hamstees"

2009-11-09T14:21:00.002-05:00

As the weather has gotten colder, the mice have started to make their way in. The boys think they're cute, so that's why we don't let them see the traps. Annoying little suckers, and noisy too.

Keeping my kid's love of rodents in mind, hubby went to the pet store. Turns out he could get them a cute, fuzzy hamster for free if he payed $18 for a cage the size of a raisin. No, thank you. The very next day, I was at work and a customer came in. She was on her way to the pet store to unload some of her rapidly multiplying hamsters. Did I want one? For free? I couldn't dial hubby's phone fast enough.

In the box, were 11 dwarf hamsters. Yeah, the ones the pet shop wants $18 for and they were ours for the taking. We selected the older 6 and my sister adopted the younger 5. This was a Friday night. They were all brought to us in one container, so until we could get home, this is how they stayed. Once we got them home, they each went into an individual temporary container. Walmart only had 3 water bottles on the shelf, so that left us with 2 and my sister 1. We rotated every few hours until we could get to the pet shop Saturday.

By Sunday, we had began to move them all to glass aquariums. Two to an aquarium with plexiglass to keep them separated. As we observed them, Matthew said something that made my jaw drop. "I see babies". No you don't, son, it's just bedding. He pokes his finger into the cage and says "there, see that little pink thing MOVING?" Oh no. Quickly Googling the gestation period of hamsters, we learned it was 2 weeks. Since we'd kept them separated from the beginning, it didn't happen on our watch. As we looked at our 5 remaining hamsters, we began to wonder how many more came to us with child. One week later, we'd have our answer. We had just 2 mommies in our midst. Between the two of them, we've doubled our hamster population. Plus one. Six hamsters, seven babies.

Being the little rodent loving kids that they are, the boys are thrilled to see the babies. Matthew likes to take a look every so often, but Brandon has turned into quite the little zoo keeper. When hubby was young, he had hamsters for a very long time. He raised them, bred them, and knows quite a bit about them. To see him and Brandon bonding over hamsters is wonderful! Brandon cannot go to bed until he's checked them out. On weekend nights, we let him stay up to help change bedding, refill water bottles and feed them. Once, we told him it didn't need to be done that night and he cried out "you did it without me?" I had to explain that they had plenty of food and water and just didn't need tending that day. He checked on them anyway.

Brandon delights in putting in tunnels made of toilet paper rolls in their cages and watching them run through them. He adjusts their wheels so they can run. And he calls them his "hamstees". While at Walmart this weekend, he sobbed because we could not buy the hamstees one of those giant plastic environments with tunnels and add ons. At $35 a pop, I am satisfied with letting them run through toilet paper tunnels. They don't know the difference! Brandon said the hamstees need something special. Maybe Santa will consider one.

Our babies are now one week and two weeks old. The two week old litter is leaving the nest to eat and have their eyes open. Brandon has declared they have grown eyes. At 4 weeks, they will be ready to leave mama and be on their own. Just in time for Christmas. I'm putting up a flier at work to find some of the babies new homes. Not that they're expensive to take care of, or even a lot of work. I'm just happen to be running out of room for cages.

I have been comparing notes with my sister who adopted the smaller hamsters. Against my advice, she has kept them all in one cage. Should be another week before she's observing little naked pink hamsters herself. She's started hunting down individual cages. Time will tell how many she needs!

An Update on Brandon

2009-11-05T21:46:00.002-05:00

A while back, I posted that we were trying to get psychological assistance for Brandon for his behavioral issues. We were able to start him on medication and after one tweak to a higher dose, it seems to be working for him.

Yesterday, we saw his psychologist for a second time. Lots and lots of questions were asked of me. I tried to explain things as clearly and fairly as I could. Brandon played with playdoh the entire time and was an angel. At the end of the session, I asked the doctor if she was leaning toward any diagnosis. She said no. Brandon is very complex. He doesn't fit into any one category and yet, we both agree that something is amiss with Brandon. You can see it, sense it. Something isn't right but nobody can put their finger on it. She said she's still considering a diagnosis of bipolar but wants to see what his teachers, counselors and other people that have interacted with him say.

She's never seen Brandon off of his meds. I'm wondering if that would change things? I'm more confused now than ever. How can my sweet guy be playing nicely once second and so explosive the next that he's destroying things and hurting people? From the very little I understand about bi polar, there are rapidly cycling periods of depressive states then euphoria and mania. While he does show the euphoria and mania, he's never been in a depressive state outwardly. He's either happy or mad, not happy or sad.

Now that he is on meds, we are also starting to see an increase in his compulsive behaviors. Repetitive picking to one place on his scalp has surged, he's stammering over his words more, and he's not able to transition activities well. He will become hyper focused on an activity and can't/won't stop until it's complete.

I wish I had more answers than questions, but I am so thankful that we have a great team of people surrounding him that want what is best for him and not to pump him full of drugs just so he will sit still and be quiet.

To Be Thankful

2009-11-02T07:42:00.002-05:00

One year ago, I was truly alone in the world. I had nothing left but my tears and my broken heart. In the aftermath of Tommy's death, the older boys stayed with their grandma while Rob and I settled things in South Carolina. Except nothing got settled. Instead, everything in my life went wrong. Rob left me and moved to Kansas. We tried to stay friends, but we were planning a divorce. Our home went into foreclosure, so instead of dealing with our fractured marriage and dealing with our grief, we packed things into separate sides of the rental storage shed. His things in boxes on one side and mine on the other. It shredded me.

I moved to KY and stayed with my sister. I was a depressed wreck. Tommy had just died, my kids were closer, but since they were in school and an hour away, seeing them was difficult. I was looking for a job and couldn't find one. I spent some time in a treatment facility to get my act together. I can't describe what it felt like to live in my body last year. Even now, remembering, I feel queasy. Somehow, I made it through each day.

Once Rob was in Kansas, it became clear that his life there was not what he had planned. We made plans and he came to KY. I was still living at my sister's, so he moved there with me. It was NOT easy. For the first time, we had to face not only what had happened to Tommy and all of our loss, but we had to make the decision if our marriage was worth saving. Emotions were very raw and once the full truth of what had happened to us came out, the phrase "adding insult to injury" is the only way to describe how I felt.

I begged and pleaded with Rob for one more chance. I told him that we would give our 100% to our marriage and after 3 months if it wasn't working, he was free to walk away, no hard feelings. So we started with Day 1. We skipped our wedding anniversary and spent every day talking about everything under the sun. It was just the two of us. We were still friends, that made things easier.

Our biggest boost came when we moved out of my sister's house into our own place. We didn't want to take the kids out of school until the end of the semester, so we had about 3 weeks of 24/7 alone time with each other. I already had a child from my previous marriage when Rob and I started dating, and then Matthew came along shortly after, so Rob and I never had "alone" time in our marriage. It's funny, living with someone for years and never knowing them. I am very blessed to have had those 3 weeks.

I'm not sure when it happened, but the time came around after the first of the year. It was very close to our 3 month agreement cut off date. We had made a huge effort to be nice to each other and we had not fought during that time. Something happened this day though, and I had had enough. I felt like he was holding back and not giving me his whole heart. I decided that I was going to move on with my life and told him so. For the first time ever, I saw my husband panic. It dawned on him what was happening and he let it all go. All of the resentment, the heartache, the pain. He wanted me. Forever. I knew from that moment my marriage had survived.

So here we are, a year later. I'm no longer alone. My kids live with us again, I work. And above all, I am happily married. When my life could not have been any darker, I have come through it a different person. My life is far from perfect. We're broke all the time, Rob is in poor health and cannot work, Brandon had behavioral issues. Tommy is still gone. My house is a mess, my feet hurt and I'm tired all the time. And I am HAPPY about all of that! We're broke because we're paying bills. Rob can't work, but he takes care of our kids instead of daycare. They have their daddy in their lives every single day. Brandon is getting help instead of falling through the cracks. I have a roof over my head and my feet hurt because I stand on them working the job to support my family. I am so blessed and thankful for those things.

Most of all, I am thankful my husband gave our marriage another shot. I've never been so happy in a relationship. Yes, we argue, probably more than we should but we work it out. Every day is still a challenge, but we rise to the occasion because we want each other more than anything. Our wedding anniversary is coming up again in two weeks. I'm thrilled it gets to be a happy day again.

November is supposed to be a time to look back and be thankful. I am so very blessed. I've never fought so hard for something I wanted. I wanted my life back. It's been so hard. In the process of all of this mess from last year to now, I've managed to figure out me. I have always put myself last as most moms do. Just when I don't think there's any more room to grow, I do. I'm thankful for myself. I love my husband so much and I am thankful he loves me. Every day is a blessing. Every morning when I wake up, I still get butterflies knowing the man I love more than anything is right there with me. Always.

Deja Vu

2009-10-30T01:43:00.005-04:00

There's a family in Charleston at MUSC that is facing some very scary things tomorrow. Their son is HLHS and can't make it off the vent. Tomorrow he is having 3 surgeries. A Nissen Fundoplication, a Gastronomy Tube placed (G-tube) and lastly, tracheostomy.

I know what this family faces. Three years ago, I walked this road myself. It was long, dark and lonely. Now that I've moved back to KY, I can no longer just go over to MUSC and visit the families like I used to do. I miss it terribly, not being near the hospital. It was my second home and comforting other parents going through what we had faced was not only therapeutic, but became what I want to do with my life. NO parent should have to face going through what I did with Tommy, before he was born, during his life and in his death. But his life passing through mine made me who I am.

I walk through my life with a sense of humor. Sometimes it is a bit wry and askew, but I'm not exactly one to conform to the masses either. Remembering Halloween right after Tommy was born, seeing the scars all over his body and the fresh zipper down his chest, I joked we should paint him green and let him go as Frankenstein. Unfortunately, he was very, very sick at the time and my humor was there to rescue me from my misery. A year later, discussing what our wee one should be for his first "real" Halloween, we tried to figure out how to incorporate the machines keeping our baby alive. Trach babies make a gurgly sound when they breathe sometimes. Perfectly normal. Just a little secretions hung up in the trach. I seriously considered a Darth Vader costume, but when I acquired the little Vampire costume, it was a done deal. He was the cutest little vampire on Earth.

I don't know the family at MUSC personally. I wish I did. I would bend over backwards to be sure they had all the help and moral support they need. My emails will have to suffice. I have such a passion in my heart to reach out to families with kids that have special needs. I don't know what I would categorize myself as. Part counselor, part researcher, part well of information. I want to turn this into my career, but can't seem to catch a break. I was accepted to college early in the year, but as the admission date got closer, it became very clear that we financially could not swing it. Even though I qualified for financial aid, transportation was a huge issue. I already travel 45 minutes one way to work. Attending the college where I was accepted would have doubled that and the amount we pay for gas. But I'm NOT giving up! I just need to broaden my options.

My heart, my dream, Tommy's legacy lies in reaching out to other parents. I want to learn ASL well enough to teach it, I want to attend IEP meetings and make sure the parents get what their child needs, I want to sit in hospital waiting rooms with moms and dads while their child is in surgery to remind them to eat, have something to drink and to talk to someone who has been in their shoes. I dream of a day where I can support my family financially by doing what I dream.

Today I dream about reaching out to that family in Charleston, with a sense of deja vu. Knowing what they are facing and wanting to let them know I'm here. That's what I wanted when I was going through this with Tommy. I wanted information and I wanted to hear what it was REALLY like, not what the doctors told me, but what a mom would say. Now I'm that mom. I have a lot to say. Just ask.

Stellan

2009-10-28T14:20:00.003-04:00

I fully intended to blog today. I have a lot of my mind that has been causing me stress. I needed to vent. And then I saw the words I hate to see. "Pray for Stellan". Oh no. I flew right over to their blog to check up on the sweet baby I've been following for months now. Stellan battles supraventricle tachycardia (SVT) and this is looking like the worst bout yet. I still have a tear stuck in the corner of my eye from reading about how things changed so quickly for him last night.

Stellan turns ONE tomorrow! Please pray that his little body can snap out of the too fast rhythm so that he can enjoy his birthday.

Having a heart child is not easy. It's a daily struggle. What Stellan is going through is what my own son, Brandon, potentially faces. Although Brandon is at low risk, his IS at risk. We've taught him to tell us if he feels like his heart is beating too fast or if he feels "butterflies" in his heart, or if he's in any pain. So far, he's told me twice. Both times we took his pulse and it was a little on the fast side, but completely normal. I'm very glad Brandon is aware of his body and tells us when things don't feel right. Poor Stellan doesn't have that option yet.

Heart defects come in so many forms. From the very serious single ventricle defects like Tommy suffered from to short PR intervals that Brandon has been diagnosed with and everything in between. Too fast rhythms, too slow. Holes big and small. There are so many! Here is a website that lists several heart defects. Tommy's is listed under Single Ventricle and is called Double Inlet Left Ventricle if you'd like to read about his. To read more about Stellan's condition, I found this link.

I wish I could reach out to every single heart parent in the world and scream that I understand. I pray for MORE research, MORE awareness, and someday a cure. Nobody knows why in those first early weeks of pregnancy does the heart not form properly. It's so early in the pregnancy that many are not even aware they're pregnant yet. Heart defects don't discriminate.

I am just one voice, asking for prayers not only for a little boy, but for ALL kids out there suffering from heart defects. Tommy was blue his entire life. I never got to hold and play with a healthy pink baby. I've seen him pink twice. Both times he was sleeping, on 100% oxygen and it was only for a moment. A rare glimpse at what would never be.

Tommy has so many playmates in Heaven now. Please pray he doesn't get any more for long time. Especially Stellan. Pray not only for Stellan, but his wonderful mother who shares his story with the world and for his family that loves him very much.

Haunted

2009-10-07T20:58:00.002-04:00

Am I coming to terms with the horrors I saw that day? Am I ready to deal with them? I don't know. Fact is, I can't get the images out of my head. The look on the medic's face as she looked at me. It was a pitiful look like she knew there was no hope and the doctor was just placating me.

The determination on the doctor's face as he realized Tommy was in full arrest and started CPR with a vengeance. Then switching off with nurses and medics. All of them sweating profusely from the sheer force of trying to save my boy's life.

The sound of anger in the Attending doctor's voice as he asked for a cuffed trach tube, but none could be found on the crash cart. Wanting to know why he didn't have IV access and had to waste precious time getting in a line.

The sound of the inncessant beeping of the heart monitor as it began to flatline. The look on the nurse's face through the window as she tried to get me to leave the room. HELL NO!

One of the medics shouted above the fray, wanting to know what Tommy was on "contact" for. I was the one shouting back pseudomonas. He flung his mask and gown off to get closer to Tommy and work harder.

I shouted his diagnosis to the medics that did not know him. I gave his history and made corrections to what was in his chart. I wanted more than anything to jump into the middle of it all and save my son's life.

Through it all, I was calm and in complete denial. Tommy had coded before. He'd been sicker. I kept wondering why they weren't moving him to the OR to start heart surgery. I was guessing he had to be stablilized. I watched my son's naked body with blood on the sheets from the emergency IV with someone compressing his heart while another breathed for him with an ambu bag while another gave shots of life saving drugs trying to restart his heart. Except watching it all, I didn't realize his heart had stopped and that meant death. I thought his heart was having trouble because it was sick, not because his body was dying.

Even when the attending called in the chaplain, I would not give up hope. My son was a fighter and had been through so much. He couldn't just die like that. He'd been fixed before. Pulled through when we thought there was no hope. And then he said it. "Call time". 10:50pm. The noise stopped, the room full of people filed out. Gone. He was just here. Blowing me kisses and signing "I love you" from across the room. My poor, sick baby. I denied it all the way until the end. I never gave up on him.

It's been over a year. The scene plays out in my head on a daily basis. I block it out the best I can, but when I am alone at work and the rain falls outside, the images will not go away. When we drive through certain parts of town (near the hotel where we stayed during the funeral) feelings of grief and horror rush back to me.

I talked to Rob about all of it and think it's time to start seeing a counselor. I saw one before but had dealt with all I could deal with at the time. Now it's time to face the hauntings.

Being Sick Has its Benefits

2009-10-01T16:08:00.003-04:00

So this is what life is like? Working outside the home, cherishing my days off and trying to fit in sleep and a little fun. I have a cold today and I spent the entire day alone.

I just realized that it has been nice to be sick. No, I am not enjoying the headache or the fact I can't stop coughing, but that I got to spend a day alone. Originally, I was to head into town to run errands all day long, but when the alarm clock rang this morning, my body responded by putting a vice grip on my head. Not a fun way to begin my day. I sent Rob to run the errands alone and I burrowed back under the covers.

Around 1, I was able to climb out of bed long enough in search of ibuprofen and caffeine. I then popped one of my favorite movies into the dvd player in my room and had a peaceful afternoon. By the end of the movie, my headache had diminished. I still have my annoying cough, but I will live.

My mother in law happens to be at her mother's today. Rob's grandparents. They live in the house in front of ours and the boys have to pass by there to get home after getting off the bus. I called and gave her a heads up that as soon as the boys saw her car that they would probably make a beeline for her. I was correct! About five minutes after the bus dropped them off, my phone was ringing. It was Matthew requesting "pleeeeeeease can we stay over here with grandmaaaaaaaa?". I already knew I was letting him stay (so I can have MORE quiet time!), but I had to mess with him just a little. I asked him about his day, his school projects. Did Brandon have homework? Did he? I managed to drag it out about 5 minutes before I told him yes, he could stay. He was suspicious, so he asked for how long? I never really gave him an answer, because what he doesn't know is that we've been invited over for dinner tonight, so he was staying late anyway. I just want to keep him on his toes.

Most people would see having a cold on their day off as an inconvenience. Why waste a day off doing nothing when there is so much that can be done? It has been the best way to waste a day in my opinion! Why be tough and force myself to run errands with a headache? Instead, I took the time for ME. I have never been one to do much for myself. I've always put others ahead of me. I'm a mom, it's what we do. I don't particularly like being sick, but for once, it was nice to tell the world to go away. Maybe one of these days I will figure out how to do that when I am not sick.

What Would Have Been

2009-09-25T05:35:00.002-04:00

My little guy would have been 3 today. Would he be walking yet? Talking? How big would he have been? Tommy is Forever One. He died 35 days before his second birthday. Last year, I was completely alone. It rained. I cried. I blew bubbles. I sang "Happy Birthday" between sobs to the ceiling as I lay in bed that night. It was such a sorrow filled day.

Tommy's birthday should be about life and joy, because that is what Tommy was. He was a flirt, he was a Ham. He was JOY. I don't know another word that described him so completely. Tommy had one birthday party in his life and it was amazing! He smashed chocolate cake and smeared his face with it. I cleaned him up in the bathroom at the park where we had the party. I didn't really plan that very well. I thought I would just be wiping his hands with a wet wipe. I did not expect to have to bathe him in cold water in a public restroom and dry him with scratchy paper towels while he protested the cold and turned a nice mottled shade of blue. I will never forget the scowl on his face. He was happy once he was dressed and back enjoying the sunshine, but for 5 minutes in that restroom, I was the enemy!

I want to share a very touching experience I had today. For the past couple of weeks, I have immersed myself in plans for my 20th high school reunion happening this weekend. It took my mind off of Tommy's birthday and missing him so much. But tonight my emotions got the best of me while I was at work and before I knew it, I was drying my wet eyes. As I am composing myself, a regular customer comes into the store. He buys scratch off lottery tickets and loses. He then asks my opinion on buying another, which he does. As he his scratching, I reach out to touch the jar sitting on the counter. Tommy's picture graces the front. My boss gave me permission to collect change to help with expenses. As I gaze down on Tommy's face, I realize someone has scribbled on the plastic with an ink pen across Tommy's face. Very annoyed, I speak out loud about who would do such a thing to MY baby! I reached for the glass cleaner and was able to clean it off.

The customer is shocked to learn the child is mine. My baby in Heaven. He quietly asks what happened and I give him the 4 second version. Softly, he begins to tell me of his own losses. His first child born 3 1/2 months premature passed away at 11 months old from SIDS. A second child miscarried, and a third also born premature doesn't live throughout the day. The oldest child, a girl, was born on September 26. One day after Tommy's birthday. I couldn't believe he had suffered so much loss. I don't think he's even 30 yet. He and his wife have been blessed with 2 healthy children now after all of their loss.

Shortly after he left, I had another customer ask me about Tommy. He shared that he lost a little girl when she was 3 months old. She had been a happy baby and never cried, not even when she was hungry. He and his wife went on to have 6 more children, the youngest a girl who turned out to look nearly identical to the daughter they had lost. He said sometimes it's hard to look at her because of the memories.

My tears were no more. I felt like God had placed these people in my path and let them share their stories with me for a reason. It softened the blow of missing Tommy. It let me know I was not alone. I spent the rest of my night at work in Joyful thought of Tommy. I am not saying I won't cry over him again. I will probably lose many tears tomorrow, but they won't be from misery. Sadness yes, but not misery. My misery has moved on. I am upbeat most days. The tears are farther and farther apart. Instead I have found that love did not stop developing when Tommy died. I love him more now than when he was alive. Not to say I did not adore my son when he was alive, but that love is ever changing and ever growing. I didn't know that was possible, but it is. My love for my son continues to grow.

Three years ago, my tiny son came into the world. Under the circumstances, we did not know if he would live through the birth. We thought he would be weak and frail. Boy, were we WRONG! Tommy entered the world with a lusty, loud cry! He APGAR'd at 9 and 9. Tiny lungs filled with air and his heart beat in a way that sustained his body. Our son was a miracle from the moment he was conceived. For 23 months, we got to enjoy his smile, his wit, his sense of humor and his unending love.

Happy Birthday, my sweet boy. I will hold you in my heart until I can hold you in my arms again.

Another Heart Child

2009-09-09T07:28:00.003-04:00

We have been trying to get Brandon on behavioral medications and part of that process is to have an EKG to rule out heart defects before starting him on a stimulant. In June, he had the EKG. It came back "borderline", so we repeated the test. It too came back the same way. We were instructed to take him to our family doctor, which we did.

His pediatrician will no longer be his pediatrician. Our family history of heart defects has turned out to run pretty deep in our families. On Rob's side, his grandmother and first cousin both have heart defects (mitral valve prolapse), on my side, my grandmother had an Atrial Septal Defect, and my niece and nephew have heart defects (mild pulmonary stenosis and Wolff-Parkinson-White Syndrome respectively). And then there was Tommy's complex heart defects. So having all of this information on our family history and knowing we had just lost a child to CHD, this "doctor" looks me in the face and tells me Brandon is fine because he can't hear anything through his stethoscope and that stimulants don't kill kids with heart defects. He had prescribed Brandon stimulants in the past before we knew he should have an EKG. This doctor apparently isn't from that school of thinking and I am so glad we began to treat Brandon elsewhere for his behavioral issues.

I was livid and stood my ground. It took me 20 minutes of persuasion with this man to get a referral to a pediatric cardiologist! I told him I had lost one son to heart defects and I wasn't losing another. He hemmed and hawed and finally begrudgingly gave me the referral.

Yesterday, we saw the PC. Brandon had another EKG in the office, as well as an echocardiogram and physical exam. As soon as the PC heard that Brandon's first cousin had WPW, he said to me "Thanks, I really needed to know about that!" and began to rule it out for Brandon. After 3 matching EKGs, Brandon's official heart diagnosis is Short PR Intervals. Here's a link that explains it better than I can. His PC was able to rule out WPW because he doesn't have the Delta waves associated with WPW, however, he is at a small risk to develop SVT (supraventrical Tachycardia) and we are to bring him back immediately if he ever has chest pains or heart palpitations.

Brandon's PC feels he is okay to be on stimulants or other psychotropic medications. This is a HUGE relief for us! However, because of the risk of SVT, I will be keeping a very close eye on Brandon and making sure he is seen by a trusted physician regularly. One that trusts my mommy-gut.

For the record, a stethoscope CANNOT detect all heart defects. Brandon's and my nephew's were detected by EKG. If all heart defects were detected by stethoscope then no baby would ever be sent home with the family not knowing their child was dying. But it happens all the time because its not a reliable method! If I had not already been a heart mom, I may have never fought to see a pediatric cardiologist. Things could have been very different and turned out to be much, much worse!

Bottom line, trust you gut. Babies need to have a pulse oxymeter test done before they leave the hospital and they need blood pressures checked in all four limbs. If you're pregnant, ask for a Level 2 ultrasound and be sure the technician is skilled in recognizing congenital heart defects. Tommy's heart defect was found by accident. If I had not had other issues during the pregnancy, I would not have had multiple ultrasounds. We had already had our "it's a boy" 20 week ultrasound and his heart defect was NOT detected at that time. If it weren't for the other issues and the tech in the doctor's office stumbling across it we never would have been sent for our Level 2. Tommy's heart defect would not have been detected and he would have not been born at MUSC but at a smaller hospital in the area not equipped for heart babies. More than likely, he would have died.

My complex heart baby may be in Heaven now, but because of him, his big brother was detected with a minor heart defect as well. Had I not been AWARE of heart defects and the many possible ways they hide...Oh that doctor is still burning me up!

Echocardiograms and EKGs are wonderful diagnostic tools, and a pulse oxymeter is a fantastic tool if only more doctors would realize it. For perspective, during pregnancy, a mother is tested for Down Syndrome. The occurrence for Down Syndrome is about 1 in 1000 births. Everyone has heard of Down Syndrome and probably knows someone born with it. There's posters in the OB's office about it and the doctors persuade the mothers to be tested for it during the pregnancy. Blood is drawn and sent to a lab, sometimes an amniocentesis is done. Scary stuff for a new mom! Now, understand that Congenital Heart Defects occur in 1 in 85 births! It's usually detected by a level 2 ultrasound. No blood draws, just a little gel on the belly and an hour of your time. A child with Down Syndrome will have challenges, but a child born with a heart defect could die within hours of birth. Or how about sent home "healthy" only to die days or even years later because their heart defect wasn't detected. Betcha that child "passed" the stethoscope test.

Living in the Present

2009-09-04T02:45:00.004-04:00

For the past year, I've been able to recall memories of what I was doing the previous year. A couple of days ago, I realized it was all a blur. From September to November, my life was nothing but one dark nightmare. Tommy had just been buried and my marriage was unraveling. I was (rightly so) a complete mess. Trying to hold on to the one thing I thought at the time I had left, I was falling into a deep depression trying to save my marriage.

I remember nightmares that I had as I slept alone in our quiet house with nothing there but memories and time. I watched tv, I packed, I washed a lot of clothes. Sometimes I washed things over and over just to be doing something. Rob had moved out and I was at the darkest time of my life.

I am NOT sharing this because I want pity or for anyone to hate or blame Rob. We all grieve differently. This is about perspective. I don't remember things on a daily basis. Really it's just a big blur of bits and pieces. It was two long months of losing my sanity. Literally.

It took me a very long time to climb out of that darkness. I had thought for so long that I could not get out of it by myself and could not go on with my life without Rob, but in the end, I had to be the one to pull myself out of the despair. There's nothing harder than finding out nobody can save you but yourself. No matter who you reach to, the hands are just out of reach.

Rob and I did find each other again and our marriage is better than it has ever been. In the light of day, we realized that our grief had overcome us in two very different ways. Mine just happened to internalize itself while he ran from his grief. While I was reaching out to cling to the one link I had left to Tommy, he wanted to get as far away from me as possible because I was the one reminder of Tommy in his eyes. Grief is a strange thing.

Looking back a year ago hurts me very much. For the first time in my journey of losing my son, I am now living in the present. Looking at each day ahead of me instead of looking back with longing and saddness.

My days are no longer filled with sadness and nightmares. I sleep soundly and even have wonderful pleasant dreams. Sometimes they are even of Tommy. I no longer feel the quietness of a house full of memories surrounding me. Instead, I am surrounded with peacefulness. A year ago, I never knew quiet could be so loud. I found there is a difference between quietness and peacefulness.

I have an annoying cat that meows constantly. I have my handsome husband playing a video game three feet from me and I can hear the soft sounds of the radio in the boy's room. I won't have a nightmare tonight and tomorrow I will probably have a headache from the sounds of the boys crashing through the front door after school. And a year from now, I won't remember any of it unless I happen to look back at this blog. It's good to finally be living in the present. I will cherish my memories of Tommy and our lives with him, but I no longer have a tapping on my shoulder making me remember what I was doing with him every single day of his life the year before.

I still catch myself staring at his picture and wiping away a stray tear. I will never forget him. But I no longer have to need to cling to my past. It took me a whole year to figure out that Tommy is in my future too, that I would not forget him and I don't have to make myself relive each day of his life. His life and my life are forever intertwined. As long as I live my life and cherish his memory, he lives.

"When I Needed An Angel"

2009-08-30T13:20:00.001-04:00

This was sent to me today and I had to share! I have included the song and the lyrics as well.

Dear Donate Life Community,

We are delighted to announce that All-4-One, the Grammy Award-winning R&B/pop group renowned for their 1994 classic “I Swear,” has released a new song inspired by organ donors and transplant recipients, “When I Needed An Angel.” The song, from their forthcoming album No Regrets, is now available on iTunes, as you will read in the attached press release.

The group wrote “When I Needed An Angel” after being touched by inspirational stories of people affected by organ and tissue donation. We are truly honored to have made this connection and are certain that once you hear the song it will touch your heart and you will realize that All-4-One has truly delivered an angel to the Donate Life mission!

The members of All-4-One – Jamie, Delious, Tony and Alfred – are proud to support the Donate Life community. “It means the world to us to be able to contribute something outside of our constant prayers to help people receive an extension of life. Every download of ‘When I Needed An Angel’ will inspire someone to become a donor and help the more than 103,000 people now waiting for a life-saving organ transplant.”

All-4-One will generously contribute $.40 cents of each download from iTunes to support our collaborative efforts to inspire the nation to donate life! We encourage all of you to inform your community of this opportunity to support our life-saving mission!

To download the song, go to iTunes and enter “When I Needed An Angel” in the search field. To listen to the song in its entirety: http://www.youtube.com/watch?v=bJ1Lm6Yik4Q

what can i say,
when i can’t find the words to possibly explain
what i’m feeling inside
i tried to believe,
my whole kept faith everyday that passed me by
and then you came in my life
and now i am living proof
of what the gift of pure love can do
when i needed an angel
here was you who made the sacrifice
just in the nick of time
when i needed an angel
i didn’t have to look to the sky
cos you made me realize
that you were right here all the time
(right here all the time)
right here all the time
sometimes i cry
when i think about everything you’ve done for me
and i still can’t believe
that i can live my life
every breath i take i take for you and me
that’s a promise i’ll keep
and each night i think of you
and how your gift of love pulled me through
when i needed an angel
here was you who made the sacrifice
just in the nick of time
when i needed an angel
i didn’t have to look to the sky
cos you made me realize
you were right here all the time
(right here all the time)
right here all the time
baby one day everyone will say
that i wanna be somebody’s angel
and i will tell the world (tell the world)
about this miracle
every moment i’m awake
i’ll give the love you gave
ohhh angel..
when i needed an angel
here was you who made the sacrifice
just in the nick of time
when i needed an angel
i didn’t have to look to the sky
cos you made me realize
that you were right here all the time
you were right here all the time

Day One...again

2009-08-21T07:30:00.002-04:00

What a year. What a difference. Yesterday started very early for me. I stayed up all night long while a close family friend was in labor. She is in New Jersey, her mother is in South Carolina, and her aunt and grandmother are here in KY with me. Between email, texts and instant messages, we kept each other up to date on her status. It did not escape us that the baby was born one year to the day of Tommy's passing. Tommy must have had some last minute instructions for little Sarie!

After she was finally born at 3:59 am and I had gotten a picture and the word that all was well, I decided to take a short nap before getting the kids up for school. Guess who didn't wake up? It worked out okay because we had planned to pick them up early anyway because of doctor's appointments. Gosh, it all sounds so normal doesn't it?

The appointments were actually for Brandon mostly. I took him to his NP for prescriptions for his behavioral issues. We had done an EKG on him in June and she told me that there was a blip on the EKG so she wanted it repeated before prescribing a stimulant. With the family history of heart defects, it really isn't a good idea for Brandon to be on medication without knowing the state of his heart. We got orders and went to the hospital for another EKG.

We had the technician send preliminaries back to the NP. If all was well, then Brandon would get a prescription for a stimulant. Back to the NP's office to wait. A few minutes later, her nurse was handing me the prescription. Yay! I took it to Walmart to have it filled, but since we are transitioning from one type of insurance to another and are not covered at this time (even though the new insurance said it is processing and will backdate for 3 months) I was told I would need to pay out of pocket for the prescription. $128.00! Called the NP back and was told they would write a prescription for short term Ritalin which was on the $4 dollar plan at Walmart just so he could start on something. We were getting short on time by then, so I opted to wait until Friday to pick up the new prescription.

We stopped to buy bubbles. LOTS of bubbles. Then we stopped to have a late lunch. I didn't have time to sit and mope. After lunch, we took our bubbles to the cemetery and blew bubbles for Tommy. We scheduled a time to blow bubbles at 7pm with everyone across the country in remembrance of Tommy, but we all wanted to visit his grave, and it didn't seem right not to blow a few bubbles there, so we did.

We then got on the road to head to Louisville to meet Rob's family. His grandmother is in a physical rehab facility recovering from heart surgery. Most of Rob's family was going to meet us there to blow bubbles. We were on our way when I got a frantic phone call from the NP's office. Her nurse told me NOT to have the prescription filled because when they got the official report on Brandon's EKG, the blip was still there! They aren't cardiologists so they can't tell me exactly what is going on, but the notes written by the doctor that read the EKG say it is a "borderline EKG with sinus arrhythmia". Not a clue what that means for Brandon. Could be just typical for him, could be something we need to watch. At any rate, I'm calling the doctor's office this morning for an appointment.

We made it to Louisville and had a nice visit with everyone. We went down to the courtyard to blow bubbles. It was amazing seeing them fill the air. I took lots of pictures. I think final count was 90! My mother in law found some sort of bubbles that didn't pop. An hour later, the bubbles were still clinging to the shrubs, the sidewalk and the wall! It was amazing!

After bubbles, Rob, the boys and I made our way to McDonald's for ice cream, then home. Once the boys were in bed, I had time to read all of the beautiful messages left for us online. So many people blew bubbles for Tommy! Rob and I decided to watch a show on Netflix.

I had my first and only surreal moment of the day.

Last year, after we came home to SC after the funeral without the boys, my marriage fell to pieces. Rob moved out after we got home. I was truly completely alone. I washed a lot of laundry and watched a lot of tv at night. One of the things I started watching was a new series on SciFi called "Sanctuary". I always thought Rob would like it, but I could barely get him to talk to me, much less snuggle up and watch a good tv show with me. Guess what series we are now watching on Netflix. Together. "Sanctuary". Only this time around, we're snuggled together on the couch after a day of celebrating our beautiful son together.

In the past year, we have gone from losing the most precious thing in our lives, losing our home, our income, our children and our marriage to having a safe, stable home, a new job, happy kids and a marriage that is blessed and strong. Life is so different! I would love to say "my life is so much better than last year", and it is, but it feels like I'd be betraying Tommy's memory. I'd give up my last breath to be able to hold him again.

This time, a year ago, my world was falling apart. My arms hurt from not holding Tommy. My eyes were sore from crying and my heart was broken. I woke up empty and alone. This morning, I woke up in my husband's loving arms and got up and put my kids on the school bus. They giggled and waved as they went out the door, telling me to have a good day. I think I will.

It has taken me a year, but I have come to learn that Tommy never left me. His body was weak and died, but Tommy has been here all along. I still cry. I've finally come to the acceptance stage of my grief. That's the clinical terminology. I will never "accept" that my son died. I will acknowledge it and admit it, but it will NEVER be okay. My son is an angel because he was born too soon with birth defects his doctors could not fix. There's no cure for heart defects. Heart surgery is a band aid. We need more.

For Tommy and Seamus and Gracie and Hope and Annabelle, all the other angels that have lost their fights.

For all the heart kids too numerous to name here.

My arms are empty again on day one of year two. Life goes on. Sadly, life goes on. A few weeks ago, I thought for sure that I would spend the day locked in my room under the covers bawling my eyes out. I surprised myself. Not to say tomorrow won't look like a good day to do so, but yesterday wasn't. I plan on keeping Tommy's memory alive and strong. He's always with me as I said before and the more I share him, the brighter that light inside of me that is him will shine. When you see me smiling, it isn't because I'm just happy. It's because a little boy gave me the HONOR of being his mommy for 22 months and 25 days.

Remembering Tommy~ Sept 25, 2006-Aug 20, 2008

2009-08-19T06:02:00.002-04:00

Make photo slide shows at www.OneTrueMedia.com

The Heart

2009-08-19T02:00:00.003-04:00

Tonight I received an email from my friend, Sierra. I've seen this before, but today, on the eve of the one year anniversary of Tommy's death (8/20), it hit me right in the gut. I bawled my eyes out. Thank you, Sierra for sending it to me. It was pain and comfort all at the same time.

The
Heart

"Tomorrow morning," the
surgeon began,
"I'll open up your
heart...."

"You'll find Jesus there,"
the boy
interrupted.

the surgeon
looked up, annoyed "I'll
cut your heart
open," he continued,
to see how much damage
has been
done..."

"but when you
open up my heart, you'll
find Jesus in
there," said the boy.

The surgeon
looked to the parents, who
Sat quietly. "When
I see how much
damage has been done, I'll sew
your
heart and chest back up, and I'll
plan
what to do next."

"But you'll
find Jesus in my heart. The
Bible says He
lives there. The
hymns all say He lives
there. You'll
find Him in my
heart."

The surgeon had had enough. "I'll
tell
you what I'll find in your
heart.
I'll find damaged muscle, low
blood
supply, and weakened vessels.
And
I'll find out if I can make you
well."

"You'll find Jesus there too. He
lives
there."

The surgeon
left.

The surgeon sat in his office,
recording his notes from the
surgery,
"....damaged aorta, damaged pulmonary
vein, widespread muscle
degeneration.
No
hope for transplant, no hope for cure.
Therapy:
painkillers and bed rest.
Prognosis:
here he paused, "death within one
year."

He stopped the recorder, but
there was
more to be said. "Why?" he asked
aloud.
"Why did You do this? You've
put
him here; You've put him in this pain;
and You've cursed him to an
early death.
Why?"

The Lord answered and said, "The
boy,
my lamb, was not meant for your
flock
for long, for he is a part of My
flock, and
will forever be.
Here, in My flock, he will
feel no pain, and will be comforted as
you
cannot imagine.

His parents will
one day join him here,
and they will know
peace, and
My flock will continue to
grow.."

The surgeon's tears were hot, but
his
anger was hotter. "You created
that
boy, and You created that heart.
He'll
be dead in months. Why?"

The
Lord answered, "The boy, My lamb,
shall
return to My flock, for He has
done his duty:
I did not put My lamb
with your flock to lose
him, but to retrieve another lost lamb."
The
surgeon wept...
The
surgeon sat
beside the boy's bed; the
boy's
parents sat across from him. The boy
awoke and whispered, "Did you cut
open
my
heart?"

"Yes," said the surgeon.
"What
did you find?" asked the boy.

"I found
Jesus there," said the
surgeon.

Author
Unknown

Happy Birthday to Me!

2009-08-18T08:49:00.002-04:00

I dreaded my birthday for a whole year. Last year was so miserable that I never wanted another birthday again. But I am loved and many, many people wanted to see me have a happy birthday. Starting at midnight!

My first birthday wish came from my mother in law, who called me at midnight to sing me happy birthday. I had just finished working a 13 hour shift and Rob was driving us home. When I got home, I logged onto Facebook and found a few birthday messages. By the time my birthday was over, I would have about 45 messages! Wow!

My sister called me and sang me happy birthday as well as my mother in law (again) and her sister later that day. My mom is just as busy as I am, so she left my birthday card at work for me. I get a kick out of the fact the card is called "Ode to a Busy Person", LOL! I get my work ethic from her. She's the ultimate "do whatever it takes" mom!

Rob and I went out for lunch. We went to a local Mexican restaurant here in town and had lunch special fajitas! Yummy and low carb! I ended my day by working a short shift at work. I told Rob I wanted birthday cake, but he thought I was joking because I have been such a stickler on this diet about low carbs. I ended up getting cupcakes on the way home and made him sing me happy birthday while I ate them.

I have to say the best part of my birthday was hearing Rob tell me happy birthday and that he loved me. I've kept a lot of things private, but last year on my birthday I didn't hear either of those things from him. I am so thankful for the changes in my marriage. I could have went the whole day without another birthday wish after hearing one from him. It really did put me on cloud nine.

Grief..and Peace

2009-08-15T02:16:00.002-04:00

I have been asked to attend a Women's Revival Saturday morning. The topic is dealing with losing your child and grief. The lady that invited me, Lisa, lost her children 4 years ago in a fire. Yet, she reaches out to me and tells me that what I have gone through is worse. Much worse. In our talks this past week, she has asked me to speak tomorrow as well. She thinks God will speak through me, hoping to help someone there that needs to be spoken to. I have agreed.

I am conflicted by Lisa telling me that what I have gone through is worse. Losing a child is losing a child. She says because Tommy was sick and we knew he would be born sick that essentially we grieved from the moment he was born. I guess she is right. I never looked at it that way before, but it makes sense. I grieved a healthy pregnancy that I did not have. I grieved not having my perfect, healthy child. I grieved unmet milestones and delays. I just never knew that was what I was feeling.

I am really looking forward to tomorrow. My sorrow is changing. It no longer holds me down and drags the tears out of me. My sorrow is beginning to turn into positive things. If talking about surviving Tommy's death helps ONE person tomorrow, then it will all have been worth the struggle.

I never thought I would see this day. The day God let my heart start to heal and allow me to say that I am at peace. I will never stop loving my little boy, but I've moved into a place where I can love him even more, if that were ever possible. Tommy has moved into a special place in my heart and is always near. He allows me to reach out to those hurting and share his love.

The sweet little boy who lived inside of my body and was given life by my life has done the same for me. His life has given me MY life. A new purpose, a hope, and reason to live again. His memory will help me reach out to those hurting and show them what love is. Tommy was perfect love. Tomorrow, I will use that love to let the Spirit guide my words. As long as he lives in my heart, Tommy lives on forever.

Random Thoughts

2009-08-07T00:25:00.002-04:00

Coming into August, I was nervous I would be a wreck every single day, but strangely, life has been somewhat normal. My friend Sheila came down from Indiana for a couple of days and we went to visit Tommy's grave. I guess it is becoming more routine for us, because for once, I didn't cry and the boys laughed as they picked wildflowers to scatter on his grave. Sheila did cry, but it was reality for her. She'd never been.

What else has been going on with us? The boys started school on Tuesday and both of them are loving it.

Rob's grandmother had her heart repaired about 3 weeks ago and is finally well enough to come out of sedation. What a great blessing! It was very touch and go in the beginning.

I managed to sprain my left wrist at work on Tuesday night. Bummer. It really hurts, but I am keeping it wrapped and as long as I don't move it too much the wrong way, it's fine. It hurts a lot less today than it did yesterday, so I am hoping by the end of the weekend, all will be well.

Rob and I, along with some friends started the Atkins diet on Tuesday as well. After the first two days, Rob and I weren't so sure that a high fat diet was good for our hearts, so we have modified it to our needs. Lean meats most of the time and low carb veggies. No butter, salt, fat, mayo or grease. We do indulge in bacon occasionally, but other than that, everything has been lean. I've lost 5 pounds in 3 days. I know, it's all "water weight", but who cares...I've never lost 5 pound in 3 days on any other diet. My goal is to be somewhere in the 135 to 150 range. The scales this morning said 212. I have a long way to go! I am considered to be in a pre-diabetic state, so this has double the health benefits for me by cutting out the carbs. The best part of this diet is that working in a convenience store we have a plethora of pork rinds. LOVE them and they're zero carb. Any time I get the munchies, I grab a bag. Now to find out where we keep the zero carb chocolate chip cookies.

I have a few things coming up in the next two weeks. Matthew has shots next week, I have been invited to hear a speaker on losing a child, my birthday, and finally, the BIG day. The one where I plan to hide in my room and cry all day, but maybe I will surprise myself.

Tommy was joy. Instead of feeling sad and sorry for myself that day, I should make his memory a thing of joy. Yes, there will be tears, I can't stop the tears, but I CAN stop getting prepared to be sad. Tommy's life is worth celebrating every moment. Maybe this is acceptance. Maybe it's denial. Either way, it is not pain today. It might be tomorrow, but for now, I will take feeling good and feeling myself surrounded by Tommy's love.

Tommy lives on!

2009-07-30T13:58:00.002-04:00

Last year, I was contacted by Passey-Muir about using Tommy's videos on their website. I am pleased to announce that the website has been updated and our sweet Tommy's memory has been honored on their website.

I always said Tommy was famous. He's going to live on through the website and continue to help other families. I am touched and honored that Passey Muir chose Tommy to represent them.

Click Here to see Tommy in action.