Posted by: Hallie Levine | September 7, 2015

“Thank God She Can’t Read”

Six years ago, when I was pregnant with Teddy, I stumbled across a message board post from a woman who already had a child with Down syndrome who had just learned she was pregnant with a baby with Trisomy 18.

She was beyond devastated and could not, in her own words, believe “lightning struck twice.” Unlike Down syndrome, Trisomy 18 is incompatible with life. She’d already scheduled a termination, but was reaching out into the anonymous ether of cyberspace for support. She was terrified to confide in others, frightened people—especially other parents of kids with Down syndrome—would judge her for making what was clearly a gut-wrenching choice.

My heart ached for this woman. I couldn’t imagine having to make such a painful decision and not be able to reach out to others for fear of being condemned for it. She was mourning the loss of her child while at the same time feeling like she had to skulk around in secret to terminate.

I thought about her again two years ago, in 2013,  when North Dakota passed legislation banning abortion for a “genetic abnormality or a potential for a genetic abnormality”, including, of course, Down Syndrome. I was angered by the law, and wanted to speak out, but was afraid. I’d written before about how if I knew Johanna had Down syndrome I would have terminated and the amount of hatred spewed at me was jaw dropping. I wasn’t eager to encounter that onslaught again.

Then, a couple weeks ago, I learned Ohio was poised to pass a similar ban, specifically prohibiting abortion for Down syndrome. I was horrified and decided I wanted to take a public stand. The result is an essay published in Yahoo last Tuesday. https://www.yahoo.com/parenting/if-i-knew-my-daughter-had-down-syndrome-i-would-128029396977.html.  It quickly went viral, perhaps in part due to its provocative title (which, by the way, I did not write) and even garnered international attention http://www.dailymail.co.uk/femail/article-3218673/Mother-young-girl-syndrome-says-terminated-baby-diagnosis-pregnant-fights-protect-abortion-rights.html I was deluged with responses. I was heartened to get so many messages from people thanking me and offering their support (including many folks in the Down syndrome community) but was not surprised to also be bombarded with virulent, hate-filled responses. Some people wished me brain cancer or told me I deserved to be locked in a basement and drowned (eyebrow raising since they claim to be so pro the sanctity of life). Others threatened to call CPS to take my children away.

I felt oddly removed as I read these missives. Part of it is I’ve developed a very thick skin over the years. Part of it was I was expecting so much worse. And another part is simply that I adore my daughter so much—and am so secure in her love for me—that I just didn’t care what strangers thought.

But there was one message that got under my skin. It was a woman who spent several paragraphs berating me for wanting to “murder your beautiful, precious gift and publically announce to the world that you wish she had never been born.” (For the record, I never said either.) I rolled my eyes as she pronounced me a “monster” and informed me “Downs’ kids are the sweetest, most loving creatures in the world.” The clincher came at the end: she wrote that she was “thankful” that my daughter would never be able to read, and thus understand what I’d written.

So I have a response for her, and for others as uneducated and unenlightened as her.

Jo Jo can read—beautifully. Most people with Down syndrome are able to ultimately read at a fifth grade level, and with all the advances in early intervention and special education, kids in Jo Jo’s generation will most likely have decoding and comprehension skills that are even higher. But that’s irrelevant. My daughter knows that I love her with all my heart. She is bright and compassionate and kind and I know that when she is finally able to read this, she will understand. She will be gracious enough to forgive me for my original shortcomings, and realize they came from misconceptions and misguided fears. She will realize that I value her as the gift she is. She will also be savvy enough to see the Ohio bill—and others like it—for what it is: the latest salvo by an extremist movement to curtail a woman’s right to choose. She will recognize the hypocrisy of proclaiming her sanctity to life while at the same time slashing federal programs and research designed to benefit her. And above all, she will thank me for valuing her as a woman first and foremost, so much so that I’m willing to speak out to defend her right to determine what happens to her own body.

Jo Jo is, after all, my daughter. She comes from a long line of individuals who have fought hard for women’s rights. My mother marched in Washington, I marched in Washington, and I know one day, she most likely will too.

She is my little warrior girl, and I am beyond proud, of the child she is and the woman she will one day be.

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Responses

  1. I saw that article on Yahoo and already knew of your thoughts on this particular issue. I was mostly excited to read something you wrote and see a pic of JoJo! I have missed your blog posts, I hope there are more to come soon. JoJo looks so grown up, I see a lot of you in her face:) I hope life is going well, thanks for being a voice for women’s reproductive rights!

  2. Thank you Mara! Good to be back at blogging

  3. Hi, Hallie —

    Just read your Yahoo! article as I sit here (erm . . . I’m supposed to be working), pregnant at age 45 (seriously, WTF?) with my second child (my son is 7). I can imagine you’re telling the hand-on-a-bible truth when you say you’ve developed a thick skin, so you don’t need my “Amen!” to keep your face in the sunshine — but I just want to applaud you for telling your story, and for providing a POV that’s somewhat unique on this issue. And FWIW, I see no dichotomy between taking delight in your own daughter and believing pregnant women should have the right to terminate a DS pregnancy. I think you’re spot-on. Truly, despite the sensitive and heavy subject matter, your story was a pleasure to read.

    I also kinda want to be your new bestie.

    I will say, though, that reading your story (and a similar, linked Yahoo! story from a woman who chose to abort based on first trimester screening and follow-up CVS) heightens my concern about the reliability of the first-trimester screening tests. Or, rather, my concern about parents choosing whether or not to terminate a pregnancy based on the results of these tests; I’ve read quite a few anecdotes from parents who either *wanted* to terminate based on the results, but for some reason didn’t — and wound up with a child who had no chromosomal abnormalities, OR carried to term, believing (based on their test results) that their child would not have chromosomal issues — and . . . well, you guessed it.

    I’m not about to start a one-woman crusade against these tests; when I had mine, I was provided some peace of mind. However, because of the results from those tests, I too was discouraged from having an amnio (because the risk of miscarriage from the procedure was determined to be higher than the risk of a chromosomal abnormality in the fetus, based on my blood screening), which I think is a mistake. As predicted, preliminary results from my amnio show no abnormalities in chromosomes 13, 18, or 21 (still waiting for the full results) — but still, the more I read stories similar to yours, the more I cringe over the fact that pregnant women and their partners are, I think, being slightly misled as to what the blood screenings do and do not mean.

    Granted, there are no guarantees; my precious son was born with no chromosomal issues, and is happy, healthy and thriving at age 7. But does that mean he won’t one day end up hooked on crack, living in my basement, and selling his own teeth for a fix? Or that he won’t wind up with some other health issue, like cancer? Or that he won’t wind up knee-deep in the hoopla as the front man for a Starship cover band? No.

    I just think that any pregnant woman/couple who wants to take advantage of all the resources at her disposal to gain as much information as she can about her pregnancy should be allowed to do so. I’m sorry for the fact that you were discouraged from doing so. And also sort of glad (because your daughter is gorgeous, and the photos you provided for the Yahoo! article show your delight in her). No dichotomy there, either.

    Cheers!

    • Chandra, thank you for sending such a lovely note! First of all, congrats on your pregnancy. Secondly, thank you for your support and for “getting” what I was saying. The first trimester screening tests now have a very low false negative rate, so if your test comes back with a low risk of one of the trisomies, that’s pretty accurate. What ob/gyns don’t often tell patients, however, is they have high false positive rates, so if yours does come back “abnormal” you should NOT rely on that alone but then get a CVS or an amnio. The companies marketing these screening tests are not the most ethical, alas, and that often gets lost in the shuffle. Regardless of whatever prenatal testing you choose to do (or don’t do) the bottom line is it’s your body, and you should do as you want! And yes, I can always use a new bestie, so please keep in touch and let me know how you are doing (and feeling) as pregnancy progresses.


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