And now, the entry I’ve been putting off writing, the one I where I address one of my biggest fears about this baby, and about motherhood in general.
When I was about 20 weeks pregnant, I was offered an amniocentesis test. I declined, because these tests carry about a 1 in 200 chance of miscarriage. I had a miscarriage just before I got pregnant with this baby, and it was awful. I won’t go into the details of the experience, or how badly my case was mishandled by my (now former) doctor. I do remember I was on deadline with the magazine, and I felt terrible cramps, and I knew immediately what was happening because I’d been somewhat prepared for it (though my dumb doctor told me that it was possible that there had been a mistake in the lab and my hcg results weren’t accurate, so of course I’d gotten my hopes up). I went to the bathroom and saw bright red blood and knew at once that it was over.
After the longest 10-minute subway ride in history, I went home, crawled into bed, and cried gasping sobs while my husband held me. The next day, I got it together, more or less. I didn’t go to work, and I more or less stayed in bed because of the physical pain, but I didn’t spend the entire day crying. I resolved that as soon as I could, I was going to try and get pregnant again.
It’s a good thing I did, because I got my period after only three weeks and conceived my baby about 10 days later. I spent the first 12 weeks basically living like a monk the moment I found out I was pregnant and freaking out at every little ache, pain and twinge. I turned down the offer of a CVS test at 12 weeks (it basically screens for the same things as amnio, but catches them earlier; it makes it easier to terminate, if you find something wrong, since it’s earlier, but it carries a higher risk of miscarriage). Then I was offered a series of blood tests, one in the first trimester and one in the second, that would give my odds of having a baby with Down Syndrome or Trisomy X. I also had what’s called a nuchal translucency screening, which tells you within 90% accuracy if your baby’s neck is abnormally sized (I think it’s the neck; it’s been awhile). This somehow can be a predictor of potential abnormalities.
My nuchal came back normal and my blood tests showed pretty low odds, much lower than the 1 in 200 chance of miscarriage with amniocentesis, so I decided to skip that procedure. And then try to forget about the possibilities ever since.
Look, I know there are worse things than having a child with Down syndrome. From what I understand, most parents struggle with it at first but then come around to say that they have learned more from their Down syndrome children than they ever could have thought possible. Many children with Down syndrome grow up to be happy, healthy, productive adults who vastly enrich the lives of those around them. Like, for example, John Franklin Stephens, the Special Olympics athlete who wrote Ann Coulter an open letter after she sent hateful tweets about Obama using the word “retard.” Go read the letter here (and have some tissues handy). Okay, now that you’re back--isn’t that amazing? Who wouldn’t want a son like that?
But here’s the thing: the life expectancy. I just finished re-reading “Operating Instructions,” Anne Lamott’s book about her son’s first year, and in it she basically says that she wishes all these awesome things for her kid, then realizes she doesn’t give a shit about any of it--the only thing she really wants is for him to outlive her. That is the only thing any parent truly wants. And with Down syndrome, the life expectancy is shorter, though it is much longer than it used to be. So that’s part of it. But I’d be lying if I said I also just don’t feel like I’m ready for those kinds of challenges. The fact is, I don’t know whether my child has it or not. I won’t know that until he or she is born.
And even if he or she doesn’t have it, there is a chance something else could happen--autism, behavior disorders, or something far more pedestrian that still falls outside the scope of what society deems “normal.” There is a book that came out recently, “Oddly Normal,” that talks about this (the author’s son is gay and attempted suicide at 13 despite having the love and full support of his parents). I haven’t read it, but it’s sparked a lot of articles about what can happen when your kid turns out to be something other than so-called normal.
Anyway, this is all very heavy. It’s too much to think about right now. Because I am a horrible person, I have to admit this also reminds me of this.
When I was about 20 weeks pregnant, I was offered an amniocentesis test. I declined, because these tests carry about a 1 in 200 chance of miscarriage. I had a miscarriage just before I got pregnant with this baby, and it was awful. I won’t go into the details of the experience, or how badly my case was mishandled by my (now former) doctor. I do remember I was on deadline with the magazine, and I felt terrible cramps, and I knew immediately what was happening because I’d been somewhat prepared for it (though my dumb doctor told me that it was possible that there had been a mistake in the lab and my hcg results weren’t accurate, so of course I’d gotten my hopes up). I went to the bathroom and saw bright red blood and knew at once that it was over.
After the longest 10-minute subway ride in history, I went home, crawled into bed, and cried gasping sobs while my husband held me. The next day, I got it together, more or less. I didn’t go to work, and I more or less stayed in bed because of the physical pain, but I didn’t spend the entire day crying. I resolved that as soon as I could, I was going to try and get pregnant again.
It’s a good thing I did, because I got my period after only three weeks and conceived my baby about 10 days later. I spent the first 12 weeks basically living like a monk the moment I found out I was pregnant and freaking out at every little ache, pain and twinge. I turned down the offer of a CVS test at 12 weeks (it basically screens for the same things as amnio, but catches them earlier; it makes it easier to terminate, if you find something wrong, since it’s earlier, but it carries a higher risk of miscarriage). Then I was offered a series of blood tests, one in the first trimester and one in the second, that would give my odds of having a baby with Down Syndrome or Trisomy X. I also had what’s called a nuchal translucency screening, which tells you within 90% accuracy if your baby’s neck is abnormally sized (I think it’s the neck; it’s been awhile). This somehow can be a predictor of potential abnormalities.
My nuchal came back normal and my blood tests showed pretty low odds, much lower than the 1 in 200 chance of miscarriage with amniocentesis, so I decided to skip that procedure. And then try to forget about the possibilities ever since.
Look, I know there are worse things than having a child with Down syndrome. From what I understand, most parents struggle with it at first but then come around to say that they have learned more from their Down syndrome children than they ever could have thought possible. Many children with Down syndrome grow up to be happy, healthy, productive adults who vastly enrich the lives of those around them. Like, for example, John Franklin Stephens, the Special Olympics athlete who wrote Ann Coulter an open letter after she sent hateful tweets about Obama using the word “retard.” Go read the letter here (and have some tissues handy). Okay, now that you’re back--isn’t that amazing? Who wouldn’t want a son like that?
But here’s the thing: the life expectancy. I just finished re-reading “Operating Instructions,” Anne Lamott’s book about her son’s first year, and in it she basically says that she wishes all these awesome things for her kid, then realizes she doesn’t give a shit about any of it--the only thing she really wants is for him to outlive her. That is the only thing any parent truly wants. And with Down syndrome, the life expectancy is shorter, though it is much longer than it used to be. So that’s part of it. But I’d be lying if I said I also just don’t feel like I’m ready for those kinds of challenges. The fact is, I don’t know whether my child has it or not. I won’t know that until he or she is born.
And even if he or she doesn’t have it, there is a chance something else could happen--autism, behavior disorders, or something far more pedestrian that still falls outside the scope of what society deems “normal.” There is a book that came out recently, “Oddly Normal,” that talks about this (the author’s son is gay and attempted suicide at 13 despite having the love and full support of his parents). I haven’t read it, but it’s sparked a lot of articles about what can happen when your kid turns out to be something other than so-called normal.
Anyway, this is all very heavy. It’s too much to think about right now. Because I am a horrible person, I have to admit this also reminds me of this.
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