Down syndrome, heart defect, VSD, open heart surgery, infant, baby

I could have titled this post, “The Waiting,” but it’s getting a little redundant. I’ve written a lot about waiting, because it seems as if we go from one waiting period to the next.

We waited to find out where we’d get stationed, we waited for the genetic test results, and we waited to find out where the Air Force would move us because of our son’s diagnosis. We waited. We prayed. We waited some more. Not one of those waiting periods ended with the results we wanted.

Not one of those waiting periods seems to compare to the one we are experiencing now. No, this isn’t as emotional, but the stakes are higher.

Anderson was born with a heart defect called a VSD. For us non-science people, it’s a hole in his heart. We had a fetal echocardiogram and the cardiologist said that a VSD may be there, but if he were a betting man, he’d bet that it wasn’t. When Anderson was born, our new Cardiologist said that the VSD was only 2 millimeters. A month later it doubled in size. The doctor still thought it would close on its own.

I guess I thought if Anderson had to have open-heart surgery, it wouldn’t be that bad. I believe in modern medicine. I know it’s not as intense of a surgery as other babies have to go through. It would be difficult, but then it would be over.

It just so happened that the day we learned that Anderson’s VSD is not getting any better, I got a message from an old college friend. Attached to the message was another woman named Elizabeth. My friend thought we should meet because she is an advocate for people with DS. As I started reading Elizabeth’s story, my heart skipped a few beats. Her daughter, Mamie, had Down syndrome and she died after open-heart surgery.

Maybe I was just protecting myself before, but I did not realize the magnitude of Anderson undergoing open-heart surgery until I read Mamie’s story.

When we first learned that Anderson had Down syndrome, I couldn’t imagine my life with him. Now, I can’t imagine my life without him.

I love everything about this boy. He’s such a ham. His favorite thing to do is to talk to his dad and me. He may only say “a-goo”, but he says it with such gusto. He’s a lover. He would let you cuddle him forever. He’s always happy. He has the ability to brighten even the darkest days.

My heart was broken when I learned about his diagnosis, but now it is so overwhelmingly full. I love him so.

I don’t want him to have to go through this. I try to picture him covered in wires and in pain. It takes my breath away thinking about it. I want God to intervene. I want to take this away from him. I want the doctor to call me and say that surgery isn’t necessary.

So, here we are again.

We pray. We prepare. We research. We pray. We wait…