Saturday, March 7, 2009


In my last post, I put a link to a blog about a little girl named Gracie. With work and taking care of my family, I haven't had a moment to check her blog until today. I'm so sad to say that Gracie passed away.

It seems like every time I get on the internet and get my updates from all of my "heart" moms, I'm reading about another child earning their wings. There's always another child going for surgery and needs our prayers. Another very sick from complications, or another going into rejection after a transplant.

WHY??? 3 years ago, I was blind to this world! I never heard of a heart defect and Tommy was my 4th pregnancy. Sure I'd heard of murmurs and such or a "hole" in the heart but all of my encounters proved to be minor problems and never required any intervention. But I know differently. I know there is a world out there full of sick babies that don't make it. Every time I hear about another child passing away, especially from a heart defect, I want to reach out to that family.

I wish I could tell parents how to prepare themselves for what is ahead, but I can't because everyone grieves differently. I did what was right for me in that moment when I watched Tommy die. I had my husband take pictures of him in my arms one last time. I cut a lock of his hair. I kept the clothes he was wearing at the time. I took pictures at his viewing. I tried to implant every single memory into my head.

Now Gracie's mom and dad are facing the same emotions. How to remember, keep loving, grieve, and try to move on while missing a piece of themselves. Too often the world feels it's time to move on when we're not ready. I for one, go about my day to day life, but when I fall asleep at night, I still cry. I wave when I drive past the cemetery and I blow bubbles to Heaven for him when the mood strikes me.

I want to hear him saying "mama". I want to hear the sounds of the machines. It's much too quiet at night these days. I want to see that smiling face despite what he's going through. Life was hard, hard, hard with Tommy. I can't believe how simple things are these days. I wish for the hard life again. Of trach changes and middle of the night ER trips. Of feeding trials and therapy 3 times a week. Of machines and supplies. Medications and feeding pumps. I'd do it all again because my baby would be ALIVE. No matter how hard it got, I loved him so much. I'm so sorry I ever complained about anything. At the time, I was just so tired and frustrated.

I hope I dream about him again tonight. My arms want to remember him. I want to smell his head again and hear that laugh. I want to hear "mama" and see him sign "love you" to me as he kisses my cheek and hugs me. I miss his little baby hugs. He had just learned affection a couple of months before he died. It took him a very long time to kiss my cheek. He didn't like things touching his mouth. It was a huge step for him to be able to do so.

So now I get to go back to reality. A life where I am mom to 3 boys instead of 4. A life where I do regular mom things like helping with homework, going to work, and cooking dinner. A life where I can sleep next to my husband at night. I still wake up at 4 a.m. despite my best efforts. My body still wants to check on Tommy. I always checked on him at 4 to refill his feeding pump and suction him if he needed it. Hopefully tonight I won't awaken at all, seeing that it is after 3 in the morning now.

I sometimes wonder if this will get any easier. If someday the tears won't fall so quickly. Then again, as long as they do, Tommy is alive and kicking in my heart. Just as strong willed as ever.

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Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries