That’s what our geneticist said several times last week, in reference to Ulysses, “the lights are on in there.” Because that was the big worry, see. Before he was born it was near certain. Everyone we spoke to made sure we were prepared for the likelihood that our baby’s brain development had been compromised. And then he was born and he was fine. He was as fine as a baby with missing bones (and adjacent anatomy) and a hole in the heart can be. But you don’t experience that level of worry without some repercussion, without the fallout of feeling like a crash test dummy thrown from a windshield into a wall. It’s taken all these six months to stop anticipating that at any moment some other surprise could reveal itself. So even though he’s been trucking along, no red flags, that wonder baby of ours, it was very reassuring to have the geneticist affirm that his brain still seems typical.
Let me tell you why this was such a fear of mine: how would a future of bilateral amputations and prosthetic legs be successful if he is neurologically impaired? I already cannot comprehend how anyone can learn to walk without feeling the ground beneath their feet (without having any feet!) but to be mentally deficient, as well? Would walking even be possible? Would we even consent to the surgeries?
I told the geneticist that my pat response to people is that Ulysses has a “rare genetic condition that affected all four of his limbs” and the doctor applauded my tact and said he would probably tell people, “it’s none of your business!” if he were in my position. It’s hard to know how much to say. I want to say nothing; I want to walk up and down the street with a sandwich board strung over my shoulders with the whole story written in bold sharpie. I want to do the thing that will give Uly the best chance of acceptance and support.
So, I was dreading that appointment, so much, since it had been made, but as it turns out, that was the least dreadful part of that day. Do you want to hear something terrible that happened to me a week ago? On the way to the appointment, with just my napping babe in the backseat, my car died. On the freeway. And if you’re familiar with Portland I will tell you these two words and you will understand completely why I have been a tense back-aching mess since then: Terwilliger Curves. It’s a heartstopping fright to have one’s car die on the freeway, but on a curve where there is no shoulder? The worst! After a minute or so (a minute dead on the freeway = a lifetime!) of cranking the ignition, my car began to drive again. The short version of this bad car karma story goes like this: we made it to the hospital and parked, met the husband who had driven across town from his work. after the appointment, it was clear that my car was unsafe (oh, what since it blew a gasket, lost all the oil, and the engine seized up), so we loaded the baby’s carseat and all my stuff into the husband’s car for the drive home, choosing to leave my car behind to be towed later. But in another my-life-is-like-a-movie moment, the husband’s car blew a fuse and died. He changed the fuse. It blew. Repeat, repeat, give up. Call two tow trucks to the hospital parking garage. It was kind of cute, almost. Like that time I accidentally bought nearly identical hiking boots to a pair my husband already owned, or the way he started wearing the same clogs I do. Even our car breakdowns are matchy-matchy!
Our car situation had held at a steady Orange Alert for years, but with both out of commission at the same time, and us living an hour from the mister’s work and an hour from many resources, we bypassed Red and went right to. . . what’s after red? Total meltdown? Because, that. We haven’t quite figured out the final solution, but we’re making do with an amalgam of stopgaps.
It’s been particularly warm here. I’ve been drinking a lot of iced beverages. I can’t come up with a quick fix for the stupid car thing and I can’t know for sure that Ulysses will learn how to walk someday and I can’t seem to stop tensing up my muscles so that I’m always ridiculously sore. But I can fill up a quart jar with ice and pour cold coffee in it and I can sit on my patio in the middle of our herb garden and I can enjoy the afternoon breeze and I can say that funny thing that makes the baby laugh every time and I can watch the big kids scooter down the block and away out of sight and I can be so glad that things can be so stressful and still so full of good.