I have writing and reading a lot this week about the idea of choice and how we talk about it. Two things came across my desktop that I think are related. The first is an article written in Slate by Emily Rapp, who is dealing with her son’s genetic disease, which is slowly killing him. She speaks beautifully about choice here, and has this to say about her situation:
“This week my son turned blue, and for 30 terrifying seconds, stopped breathing. Called an “apnea seizure,” this is one stage in the progression of Tay-Sachs, the genetic disease Ronan was born with and will die of, but not before he suffers from these and other kinds of seizures and is finally plunged into a completely vegetative state. Nearly two years old, he is already blind, paralyzed, and increasingly nonresponsive. I expect his death to happen this year, and this week’s seizure only highlighted the fact that it could happen at any moment—while I’m at work, at the hair salon, at the grocery store. I love my son more than any person in the world and his life is of utmost value to me. I don’t regret a single minute of this parenting journey, even though I wake up every morning with my heart breaking, feeling the impending dread of his imminent death. This is one set of absolute truths.
Here’s another: If I had known Ronan had Tay-Sachs (I met with two genetic counselors and had every standard prenatal test available to me, including the one for Tay-Sachs, which did not detect my rare mutation, and therefore I waived the test at my CVS procedure), I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision. I’m so grateful that Ronan is my child. I also wish he’d never been born; no person should suffer in this way—daily seizures, blindness, lack of movement, inability to swallow, a devastated brain—with no hope for a cure. Both of these statements are categorically true; neither one is mutually exclusive.”
The other thing that I read was an essay by Canadian author Nancy Huston, who often writes about abortion in her fiction. She, too, talks about the relationship between motherhood, childhood and choice. In her autobiographical Losing North she recalls explaining to a man why her novels about abortion are actually connected to childhood. After telling her that her novels leave him cold— “‘Abortion and infanticide,’ he said. ‘I mean you’ve got to admit that those are basically women’s themes’”—Huston replies that although he may not care about these issues as a man, he should care about them as a child. When he protests that he is obviously no longer a child, she explains “we’re all our ages at once, aren’t we? Childhood is like the stone at the heart of the fruit—the fruit doesn’t become hollow as it grows.” [i] I like how Huston rejects the idea that abortion or death has little to do with childhood. This rejection, however, is not simply a repetition of the stereotypical mantra “what if your mother had chosen abortion.” Instead, it is a reminder that we were once all children, and this is part of how we make decisions about whether or not to have children. It is also a reminder that motherhood is not always a route to “life,” and abortion only a type of death. Sometimes motherhood is a type of death instead, for mothers and for children, while abortion is the beginning of something new. In Huston’s case, sometimes the story exists because the baby doesn’t. As Emily Rapp pointed out, it is possible for both of these statements to be categorically true; “neither one is mutually exclusive.”
[i] Huston, Losing North, 7; 8.