Open heart surgery. One Year Later

It's exactly one year since Sean's open heart surgery. To say that it was the hardest day of my entire life, i an understatement. I won't bore you with all the gory details. If you want to, you can start here.

I remember every little thing about that day. Even the smell of the air. I remember not wanting to be touched or talked to until I had my baby safely back with me. I remember being so scared he wouldn't make it through the surgery. I mean.... so many things that could've happened in relation to his down syndrome either weren't present or never happened. So our luck was sure to run out somewhere right? I thank God that that morning was not the time our luck would run out. He made it out of surgery & thanks to our amazing ICU nurse, Eunice, he didn't need to go back to surgery to stop the bleeding he was still experiencing.

I wasn't scared of tubes because we had been warned about them & I was told that the more tubes we see leaving him, the better off he was. So we just waited. Waited for those tubes to be pulled 1 by 1.

We were allowed to touch him & I remember how much relief I felt when his skin felt warm. It was rosy & warm. He never was gray or blue before the surgery, but I was so relieved that he was warm & pink. The blood was still flowing well.

My sweet baby boy. I remember when I got to hold him in my arms. I still get weepy when I think about how amazing he felt in my arms. I wasn't afraid to break him anymore. I wasn't afraid he'd get to hot or to cold or to upset. You get the idea. It was almost as good as the first I held him when he was born. The sweet little baby that I was so afraid of. Afraid I wouldn't know what to do with a kid with down syndrome. Afraid I wouldn't get to hold him when he was born.

Here we are one year later and he's amazing. You'd never know without looking at the scar, that he had surgery. Instead of waiting to see if our luck is gonna run out, we practice our sounds in the mirror and playing "where's mommy?" to practice pulling to stand in the crib. We play a rousing game of catch the pest while changing diapers.

   

So sure. Maybe he's a little behind his typical peers in gross motor skills. He may not be walking, but he sure isn't letting it stop him from doing EVERYTHING else his typical peers are doing. And that includes making a HUGE mess and tormenting his big sister. Can you tell that he plays a mean game of tornado where he single handedly destroys the living room? He broke the door lock we have on the cabinet preventing him from getting in. Right!

And yes. Instead of telling him, "No."; I absolutely grabbed my camera & marveled in him being a normal almost 15 month old kid. And laughed. I laughed a hearty laugh because how awesome is it that my son, who I was afraid was going to die in surgery, moved the mirror, broke the lock, opened the cabinet & emptied its contents.

Thank you Dr. Bacha & Eunice for giving me my little boy. For making sure he lived to make me crazy with his antics. Thank you for making sure he lived to be a normal little boy. Thank you for treating him like an infant with a heart condition. Not like an infant with Down syndrome with a heart condition.

And thank you Sean for being an amazingly strong little boy. The Mohel complimented you and said you were strong. He said you were a fighter (even at 8 days old) & boy was he right.

Of course my gratitude extends to Rob, our family and our friends as well, but I'd be here all day thanking you all.