The heart thing

As my little Parker-bean woke up, once again at 12:30, I stopped to ponder some things as I rocked him back to sleep. Granted, he isn't the itty baby he once was. He just turned 14 months old yesterday. But he felt the same, the same smallness and vulnerability he has always had. I found myself burrowing my face into his hair, smelling the yummy baby shampoo and feeling his sweet strands of hair tickling my nose. He was curled up into me as though I was protecting him, and I could feel the slight rise and fall of his chest upon me. And I couldn't help but think of the never-ending thought. The little heart in there that has failed him.

Its incredible to me how much that little heart has changed my life. How many things seem unimportant now. How my once selfish prayers have now turned into pleas, to keep that little heart beating, as well as my Colby's and my husband's hearts beating as well. I've learned how life can change in an instant. How much you can take for granted. How you should say your "I Love You"s often, so that you don't regret it.

We are in the midst of "Congenital Heart Defect (CHD) awareness week". It runs from Feb 7 until (fittingly) the 14, Valentine's Day. I have some pretty unstable emotions about the entire thing. For starters, I know that his little broken heart is a piece of him, one that I love just as wholy as the rest of him. That just because his heart doesn't work normally, doesn't mean he isn't perfect. In my eyes, Parker is who he is supposed to be. But, at the same time, I think of the unmentionable. The feeling of terror I have felt, as all heart mom's do. The initial diagnosis, the unknown. The panic in the middle of the night. The constant and careful watching for signs and symptoms, the waiting until something goes wrong.

Out of every 100 babies born, one has a heart defect. This makes it the most common birth defect. But still, its kind of pushed aside. You get a sympathetic pat and ... thats it. Why? Why don't more people stand up and pay attention? Certain drugs have been shown to increase your odds. But most? Like us, just a bad stroke of luck. Despite all the cases that are reported each year, funding is still so limited. I'm not ungrateful for past discoveries. These helped make pacemakers smaller so that it would fit in my preemie-sized newborn. I guess, I'm just looking for more. More answers. More treatments. More hope.

Part of me has become so jaded. I worry every time I see a pregnant woman. I hold my breath as my friends and family go into their 'big' ultrasounds. They're excited to see boy or girl, but I just hope for healthy. It seems like its a miracle when things go right! That the stars aligned, and out will come a beautiful, healthy little one.

These are definitely late night ramblings, I'm not going to lie. I just watch Parker so closely, and I'm torn. Part of me doesn't want this to affect him. That he doesn't need to tell people, that he can be a normal average boy. But another part of me? I want him to know how awesome and incredible he is. How he is a fighter. How he was born to stand up and stand out. Because of his heart, he is one in a hundred. But to me? He's one in a million.