I can get really hung-up on the improbability of having a baby with differences. I don’t mean that in a bemoaning woe-is-us and our unusual baby sort of way. In the everydayness of our life, his limb differences rarely cross my mind anymore. He’s four months old now and when I look at him, I don’t see an absence of tibia bones, I don’t see cleft hands. I just see Ulysses. But sometimes, in the quiet hours when everyone else sleeps and I don’t (or won’t or can’t, who knows), I start to think about how in the statistical heck it happened that he is even here, the way he is, at all. And I wonder, is there anyone else here on the whole planet who has a body like he does? His lower leg condition (tibial hemimelia) occurs approximately once in one MILLION births. SEVENTY percent of those occurences are unilateral, and generally without other issues. His presentation is bilateral. AND he has hand differences, as well. He is rare. And the hugeness of his uniqueness can about knock me over.
I was talking to the husband about these thoughts the other day, just yammering on about “what are the odds?” thinking he’d pull some fast number out of his Math Brain for me, when he clarified, “what are the odds that Ulysses was born like Ulysses?” I think I was just curious, like I wanted him to tot up all his issues and figure out exactly how rare our rare boy is, indeed. The husband just looked at me funny, “one in seven billion. he’s a one in seven billion baby. just like everybody.” Of course. There is no one like any of us. And, yeah, most of us fall into the typical median, and, sure, my boy’s differences will present him with challenges that most people never even consider, but he’s just one of seven billion. Same as me, same as you. That any of us is here is nothing short of amazing, how ever many bones we’ve got.
I’m delighted to report that our post-op visit with the cardiologist confirmed that the repair was successful, that Uly’s heart is working exactly as it needs to now. There is a chance that as he grows, he will need another surgery. But that’s a big, blurry If and the good news at present is that he’s gaining weight and doing wonderfully and we don’t have to go back again to the cardiologist for another check-up for SIX months. His incision is a faint pink line now and I can barely remember the acute level of dreadful apprehension we lived under for months.
I have been tinkering around with some changes to my own lifestyle (sorry for the annoying vagueness), trying to get out of the funk I’ve been in for a while. It was a hard winter. Not in the Long Winter twisting hay and grinding the seed wheat sort of way, but just endlessly gray. The sky, my brain, the way I feel. I think the week between finding out about Ulysses (you know, when everybody thought he was going to die) until his extremely emotional birth affected me more than I have readily admitted aloud. And I largely spent the winter at home, being affected. I have worked through some of it, but I’ve got a lot of unseen sludge, tarlike and sticky, to get rid of. I am ready to feel good again.
So, bring it on, Spring. Even if it doesn’t feel very springy in these parts yet. We’ve still been seeing light dustings of snow, atypical for this area in March. I chose to live in the pacific northwest not in small part because I love the weather. Despite growing up in southern New Mexico and West Texas, and then confirmed by our three year Arizona experiment, I prefer the overcast to the blinding blue. But. But I could sure go for some bone baking sunshine right now. That dry oven heat that feels like a solid thing touching your face when you step outside. We might not see such a thing up here until August, if at all. So I’ll have to hope we get some clear skies and dry days soon, and make do with that.
(photo is of the birch trees and the house across the street. by the time i bothered to pick up my camera and take some snowy day pictures last week, everything else had already melted away.)