Slate has a piece worth reading up about Rick Santorum and prenatal testing. It is in some ways similar to mine: by a mom who also waived diagnostic prenatal testing and ended up with a kid with a Ridiculously Rare genetic disorder, who also adores her kid, who also is broadly sympathetic to requirements for availability of funding for prenatal testing. There are a few differences between our stances, too. She has fewer mixed feelings on the topic. She is, apparently, less conflictedly pro-choice. While I am relieved that I didn’t get a prenatal test and thus perhaps an abortion, she wishes she had, and wishes she had an abortion. Of course, her kid’s syndrome is very very different from mine. My kid has a 90% chance of living to adulthood, her kid will soon die. My son is developing, however slowly, and while he will stop developing at far too young a developmental age, he will likely not degenerate. Her son is degenerating. Although it’s hard to know, I believe under the same circumstances I would have wished I had an abortion, too. She herself is disabled; I am not. It’s a very moving piece, and my heart goes out to her.
A minor quibble in (gulp) defense of Rick Santorum. She says:
Rick Santorum, I would like you to meet my child. You should see how beautiful he is; you should see how he suffers, how his parents suffer…I believe that we need a more nuanced discussion about what quality of life is, and that it should be a woman’s right to choose to terminate a pregnancy when the path of her child’s life is as compromised—and as terrible—as my son’s.
Rick Santorum has his own child with a terminal genetic disorder. Say what you will about his views on the matter (and I too disagree with him), they do not come from lack of intimate familiarity with the issues at hand.
Just wanted to say that I read the Slate piece, and was hoping you’d respond.
I look back at my life sometimes and wonder “what if I had married Jenna instead?” (I suspect I would be divorced now). Sometimes I wonder “what if I had kids?”
Would I be happier? Stronger? “Better” (in the virtuous sense of the term)?
When I look back and think about the various children that might have been born (but weren’t) it seems like a fun game.
I can’t imagine thinking back and wondering what my life would have been like without children (while holding one of them). Does she think that she’s sadder because of her child? Weaker? Worse? Does she mourn her lost free time? Does she mourn the attention she had to give this one that doesn’t even appreciate it on any intellectual level higher than my cats appreciate my attention?
That overture is intended to signal that I know that I can’t really judge what she’s said.
With that said… I can’t imagine saying that. Then again, it’s not like the kid will read it, right?
Jaybird, I read these statements:
” 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.”
and
“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.”
answer what (I think) is the underlying theme of your series of questions (specifically, what is motivating her). She wishes her son wouldn’t be suffering as he currently is. That’s her prime motivation for wishing to have aborted him.
Now, maybe she’s trying to put the best spin on it – or she’s not being totally honest with herself – but I’m inclined to accept those statements at face value.
I also took it that seeing her child suffer was motivating her. I will also say this: initially it looked as if my son might not live, and if he did live, he would be basically non-responsive. This state of affairs lasted for six or seven months, and it was the most horrible, wrenching time of my life. Nothing comes remotely close. I’m still scarred from it and always will be. It was always possible, even if it seemed very remote, that my son would do better than his prognosis – and he did. She’s been dealing with knowing that this is what would happen to her son for three years. I know you know that, but still – just wanted to say that she’s in hell right now.
That said, there’s an interesting related issue. Recently a mom sued (and won) a case against (I think) her doctors and an ultrasound center. Apparently after seven ultrasounds, no one realized that her child had no arms and only one leg. She asserted wrongful birth – that is, that she would have aborted her child had she known of his disabilities. Her kid was cognitively normal, and presumably will know what his mother said about him one day. I had a total visceral disgust reaction to this. I could never, ever assert that I wish my kid had never been born, even though he’ll never be able to cognitively grasp that I’d said that. However, both my husband and a close friend who has a kid with the same syndrome as mine thought what the mother did was totally defensible. (Interesting further – she declined prenatal testing for her subsequent pregnancy for moral reasons.) Totally different reactions!
Here’s how I see it: If she’d known that the fetus had only one limb, she would have aborted it. And then she would have gotten pregnant again, and she’d have had another baby, whom she would have loved just as much, but who wouldn’t have had to go through life missing three limbs.
You’re trying to go back in time and project the child’s personality onto the fetus, and it just doesn’t work that way. The child that the fetus eventually became didn’t exist at that time.
I suppose I can see the child taking the wrongful personally, but only because I know that people are often irrational about that sort of thing.
“taking the wrongful death suit personally.”
But it’s a wrongful birth suit, not wrongful gestation. It’s the child she declares she never wanted to have, not the fetus. She is not saying she didn’t want to carry that fetus. She is saying she would be happier if her child had never been born. That his birth was a wrong (and a harm) to her.
I don’t think it’s irrational for a person to be hurt if his mother said that. And I can’t picture myself ever publicly declaring that about my kid, even though he’ll never understand that.