Your odds of becoming a professional athlete are twice as good as your odds of being born with Wolf-Hirschhorn Syndrome.
Never in a million years, we say, but if you were to live a million years and if you had a child every ten of those years, odds are good that two of those children would have Wolf-Hirschhorn Syndrome. In the messy process of reproduction, the cotton-ball top of a fourth chromosome would go missing for two of those kids. It just would. Across nations, races, religions, it just would.
I published an essay for Salon this time last year—about the great, terrifying leap of becoming pregnant again—and a few internet commenters said I was stupid to even try for a second child since my first was “disabled.” Their thinking: your daughter is damaged, so you are damaged, so no more kids for you.
(A sole defender piped in to say that, if I was willing to shoulder the financial burden of another disabled child, then I should have the right to procreate again.)
Social Darwinism aside, I don’t think these folks read the full essay, where I explain that Fiona’s genetic deletion could happen to anyone. Or if they did, maybe they didn’t want to swallow the wholeness of that risk, as it scrapes down their throats.
We want to believe we can garner ourselves against risk by explaining it. Cancer? Oh, must have been a smoker. And if not a smoker, an eater of greasy foods. And if not an eater of greasy foods, then a thinker of bad thoughts. Enter Louise Hay, who will tell you how to take away what ails you with positive affirmations. And if those don’t work, well then you’re doing it wrong. You’re thinking the wrong thoughts.
Two weeks into parenting Fiona—who sirened all doctors’ alarms with her smallness—I stood under a shower, water streaming down my face, and counted all the ways I’d tried in pregnancy to shape a Super Kid. 100% organic food. 100 ounces of filtered water a day. No lunch meats because of nitrates. Daily birthing meditation so I could forego the drugs. And of course, a hundred thousand vitamins. “A multivitamin with folic acid reduces the risk of Spina Bifida by 70%.”
Painfully, with the shower drenching my hair and my new four-pound baby in someone else’s arms, I realized this: I would never, ever be able to control the universe.
We want to point at the boy in the dunce cap. There’s a reason we put him in the corner, way over there. He is not us. He is an expression of an ordered universe.
It’s because your family sinned, goes one religious explanation for a child with a disability, as old as the stories in the Bible. And as new as today—because no doubt someone somewhere heard it today.
And when the other becomes us, we try on other explanations. Kinder, more comforting ones. God chooses special parents to parent special children.
And still, the statistics hang over us. One in fifty-thousand. The why is not embedded in the number. The number is indifferent to the why. The number is a puzzle with the plainest answer of itself. You are the one in fifty-thousand.
Jesus is getting nailed to the cross on Friday, at least in Christian circles. Whether you’re atheist like most of my friends or religious yourself, you probably know the usual explanation, involving words like savior and blood and atonement. But as a practicing Christian, my favorite explanation comes from a Roman Catholic priest—We don’t know why. It’s a mystery.
My own practice — however flawed and erratic — involves resting in the mystery. Sitting with the wholeness of risk before it’s divided into fractions. Turning down the mental radio of stories, and sinking into the quiet beneath. In the rare moments when I reach it, the quiet is fat as cumulus clouds. Inside, it contains not a single statistic.