Wednesday, September 18, 2013

silly smiles and superpowers

You know what's funny? The way things just sort of fall in place. They always do eventually, and when you're in the thick of it it's so hard to see how all of the puzzle pieces are going to come together, but they do. And once it's all there, and everything fits, you forget that you ever thought you were missing a piece.

The literature says all sorts of things about stages of grief and beating yourself up and blaming yourself when your child is born short of healthy.

I never struggled with any of that. I knew it wasn't my fault and I never had the "why me?" moments that the experts warn about. I knew that there wasn't an answer....there wasn't a reason why.
It just IS.

This week, though....I was hit with a clearer realization of Max being absolutely perfect. He has the most perfect mended little body and crooked little smile, and I have always loved every last bit of him. He also has a rather funky tailbone which is not really relevant, but noted. He has a killer grin and gorgeous eyes. I love EVERYTHING about him.

I have always worried, though, that he might not love his quirks the same way. Lots of kids have heart defects (1 in 100, actually) but not all of them have paralyzed mouths. Sometimes I pull down the other side of his mouth when he smiles just to see what his smile would have looked like otherwise. Curiosity gets me every time, but every time I do it, it's easy to see that it's just not "him." He looks like somebody else. MY Max has this adorable grin

and I am becoming even more and more thankful for it. Perhaps it is just another of nature's rare, beautiful mistakes, but it's becoming clear very quickly that we are at an advantage here...

1) because Max smiles, like, all day long. At every stranger, every noise, every everything. He stops traffic...literally. People get so sidetracked by him that they just drop what they're doing. I even had a stranger kiss his head once and then apologize profusely.

2) because it opens everything up for discussion. That smile is his ticket to a better understanding and an opportunity to share his story, spread awareness, and present a sort of unique beauty to the world. They notice the curve of his lips (which has been likened to popeye, a giraffe, and a mobster) and they fall in love. Then they mention how cute it is, with NO idea that it is a defect....and that there are more where that came from.

Then I get to use my big mouth and just like a vomit of words, the statistics come pouring out while Max's story is told...again.

"he looks so healthy!"

"what a miracle!"

"1 in 100? Wow...I had no idea!"

"I was born with a hole in my heart."

We all know that I like to talk. We ALL know that I like to blab about my kids all the time, and I feel like Max's heart is such an important part of his journey. I want people to know about it when they meet him. I want them to know about congenital heart defects, and how common they are and how serious they are and how we are making HUGE strides every day. How TWICE as many kids die from CHD than from all forms of childhood cancer combined, and how severely underfunded CHD research is.

Without a word, Max tells them. All he has to do is bat those eyelashes and smile at a stranger, and that is our icebreaker. That is my invitation to speak up. Max's smile is his superpower and his gift to this world. I am so glad that I get to be the sidekick.

He has taken a silent, invisible defect and brought it out into the open. His smile is the sidewalk sign, waving people in to our crazy little world. It says "Look inside! There is a whole WORLD you didn't even know existed! Come on in, let me tell you about it."

I sorta knew all of this already, but it has never been quite so obvious as it is lately.

Say "cheese," Max. It's time to save your world.