In the early years of my son's life, before I understood how far outside the norm his disabilities took us, I was always astonished to hear a parent say, “I wouldn't change my disabled child for anything.”
My wife, Johanna – an exceptionally compassionate person, and a terrific mother – never made such statements.
“I hear parents of other handicapped kids saying all the time, ‘I wouldn't change my child, I wouldn't trade him for anything,'” Johanna once said to me. We were lying on our backs in bed, talking in the night, which we did on the rare occasions Walker fell asleep. Talking into the darkness, you could say anything. “But I would. I would trade Walker, if I could push a button, for the most average child in the world, who got C's in school. I would trade him in an instant.
“I wouldn't trade him for my sake, for our sake. But I would trade him for his sake. I think Walker has a very, very hard life.”
Trading him still isn't possible, but choosing him is getting closer. A new raft of ultra-accurate, at-home, fetal-DNA tests are flying off North American drugstore and Internet shelves these days, and a massive debate is close behind.
The DNA-testing industry (which is growing so fast that the U.S. Federal Drug Administration is investigating the tests) has no sooner offered us the opportunity to select the number and gender of the babies we can have – to say nothing of the chance to guarantee they are free of some debilitating syndrome – than doctors and bioethicists are up in arms, accusing medical researchers of promoting genetic cleansing.
These arguments come along every few years now. The more science lets us interfere in the beginnings of life, to engineer what kind of babies we can make, the more we seem to need to debate who we want to be as human beings. Maybe this should tell us something.
In my house, such debates always bring on an identity crisis. Walker suffers from CFC, an impossibly rare affliction (150 known cases, globally) caused by a completely random genetic mutation. He's 15 now, looks 10 and has the mind of a two-year-old. He always will.
He is an often charming and fantastic companion, but he can't speak, or live on his own (or even with us, any more), or manage the toilet, or eat without a tube, or go for long without smashing his ears flat and ugly with his fists.
We raised him on our own for 10 years, and the experience almost shattered everything I valued – my family, my marriage, my healthy daughter's life, my finances, my friendships, life as I wanted to live it.
There was no genetic test for his syndrome when he was born (there still isn't). For a long time, not a day went by when I didn't wish there'd been one. Today, I'm glad no test existed then – that I never had to decide, based on a piece of paper damp with my wife's blood, whether my strange and lonely boy ought to exist.
Still, wouldn't he have been better off, thanks to a simple genetic test, not living his shadowy, pain-filled, so-called life? I understand the question. I understand the appeal of the DNA test, its trouble-free promise. But the answer is complicated.
