I met a newly diagnosed HLHS mom a couple of weeks ago, when we were up at CHLA for a pulmonology appointment. After our conversation, she said how nice it had been to meet Bodie, that one of her greatest fears for her unborn baby boy is that he will feel sick all the time and not get to participate in stuff because of it.
Her comment really stuck with me. I thought of my Bodie, and the crazy ball of energy that he is, and how he just LIVES his life. How he has this big huge thing that makes him different from a typical kid, but how, other than taking his medications, he doesn't really live like he's any different. How his differently shaped heart is just one thing about him, like being short or dark haired on another kid would be. How he's a little quiet and quirky at first, and how you might think he's kind of reserved (which he definitely was the morning we met this mama). But how, once he lets you in, he's just straight up goofball and really funny and quirky and wonderful.
I don't think he feels like he misses out on life because of his heart. I asked him the other day if he thought about his heart much and he said "yeah. it's cool." And I asked him if he remembered his surgeries and he said "no." And then, obviously DONE with our boring conversation, he ran off to play.
This last weekend, I've been pondering this question, and observing him and taking lots of pictures of him. And he certainly looks like a kid enjoying life, a kid who's not missing out.
So, no, I don't think he feels like he doesn't get to participate in life.
But then, I'm not in his head. I don't know how he feels. And, admittedly, I'm not the most unbiased person when it comes to how "typical" his life is. But, darn it, I'd sure like to be able to give his mama, and others like her, a serious dose of hope. I mean, something other than a biased mama's perspective.
So, here is my question for my blog readers. If you know us, if you've met Bodie and had a chance to interact with him, would you mind commenting on this blogpost? Maybe a little background of how you've interacted with Bodie (church, school, AWANA, family, friends, just watching me chase the little bugger around, etc.) and then what YOU think, in YOUR opinion about his life. Does he seem sad or like he's missing out on anything? Does it seem like he lives a pretty full life?
(I'm sure the answer to this question will change as he gets older and becomes acutely aware of what his special heart will mean for him. And for Dusk and I, as his parents, our challenge and our goal will be to help him embrace what he CAN do and not what he CANNOT do. But I'm asking the question about right now. Right this second. What you've seen of our boy.
Because this mama, and the sweet one I met at CHLA two weeks ago, really want to know the answer.)