Aurelia wants me to accept that losing Natan wasn’t my fault. I do, but not in the sense of it having nothing to do with me, but rather because I realize I’m just a mortal and very imperfect. I mean, my body is the the one that went into labor to early – or maybe my cervix just opened too quickly – no one has the answers there since my contractions weren’t monitored. And as Dr. K said last week it’s impossible to know for sure now which came first. So yeah, I’m not culpable, I didn’t get the help I needed. That maybe makes other people culpable, and I’m doing my best to avoid that again by finding a better practice. So I can make peace with that.
But still I try to imagine why it all went so wrong. Why do I either have an incompetent cervix or did I begin full contractions so early? Why after I went into the hospital did everything stabilize (in a bad place, granted) and then suddenly move really really fast. So fast and perilously that a C-section became impossible? And of course, why did he turn breech so that the cord would suffocate him on his way out? These are the questions that have no definite answers, that we can only troubleshoot in this next pregnancy.
Do not read the following as having any thing to do with other conversations happening right now in blogland. These are long-standing and very personal thoughts and feelings, particular to our life, conditions, and history, and inspired only by our need, once again, to discuss what we want out of prenatal testing. I could just go ahead with everything, but my hope is to bring in as little stress as possible, and even a blood test is taxing on my body for whatever reason.
After my miscarriage, some misguided people of course thought it would be comforting to say it was for the best, because there was something wrong with the baby. That appears now to be true, that it was a random chromosomal problem. It wasn’t for the best though, it was just inevitable. I’m sure some people might feel that Natan’s death was “for the best,” because he was 14 weeks early and might have suffered a lot had he lived.
I don’t want to give birth to a baby that will suffer a miserable life. That’s for sure. I listened to the doctors every day I was in the hospital tell me about the risks of a having a micro-preemie. I explained in response that I understood very well, but if the baby was born early, I wanted them to try and save it. I saw in my chart notes that the NICU doc wrote, “Mother seems very informed of risks & able to grasp likelihood of complications and disabilities.” I might be deluded. I have a nephew with spina bifida, who is paraplegic. I’ve done what I can to prevent that, but I won’t be heartbroken if we have a child with neural tube damage.
I know that spina bifida is one of the more attractive categories of disability. It’s neither a cognitive disability nor is it particularly disfiguring – my nephew is funny, smart, exceptionally good looking (really, I’m not showing a bias, I’d post a picture if I didn’t feel that wasn’t my place) and so great to be around. He’s a poster child. Coming from an active and athletic family, however, it has been a learning process for us – to come to value different definitions of a full life. Some of my older relatives & family friends consistently want to keep hoping that there will be a “cure” in his lifetime and that he’ll walk. I wouldn’t work against that, and I contribute to the Christopher and Dana Reeve Foundation, of course, but it’s hardly the foremost hope in my mind for him. I’m much more realistic.
Is there something wrong with me that I could never bring myself to say that what I want most is a “healthy” baby? Because honestly I don’t even know what that would mean – what that includes and excludes. Of course I’m not hoping for an unhealthy child. I know this could sound like just another example of how I nitpick over language. But it’s not. I don’t think anything of other people saying they don’t care about the gender, they just want a “healthy baby.” It makes perfect sense when other people say it.
I think I’m strange in that, while I’m not wary of having a child with physical disabilities, I don’t fear cognitive or developmental disabilities either. (Of course here I’m not talking about the horrors of disorders which cause children to live short lives of horrible pain.) I’m not deluded as to what this means. I remember thinking of a little boy, L., that I know, who has severe cerebral palsy when I discussed the risks for my baby with the doctors. His mother died during childbirth. I’m much more horrified by the thought that they could have both died and left his father alone than I am by his life now. The world of disability I’ve been introduced to by my nephew’s experience is beautiful and not something I fear joining, even if I would never hope for it.
Basilbean made the best suggestion in the comments of my Arianna Huffington Post. She said, “it is impossible to be without fear…it is how we behave in spite of the fear.” The only thing I have ever really feared is that my babies wouldn’t survive. It is really the only risk I’m passionate about watching out for. It was an abstract thought before, but I know now that that can happen to me. Yet here I am, plunging forward any way. In spite of my fear. I just hope I’m not irresponsibly condemning another little soul as I go.