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.