I read an informative article last night entitled “Don’t abort based on MaterniT21.” While the author Mark Leachis quite right–the new non-invasive prenatal tests for Down syndrome are only screening tests, not diagnostic–I am very torn. If I were to say it is tragic that 17% of women are aborting solely based on a positive indication of Down syndrome from these tests, and some are finding out after aborting that their baby did NOT, in fact, have Down syndrome, wouldn’t I also be saying that it in some way is not tragic for them to abort if their baby does have Down syndrome?

My go-to response to abortion for Down syndrome is usually, “If only they knew what they were missing.” I’ll touch on that in a bit, but I also feel compelled to write about these nagging feelings I get when I hear the statistics of abortion for Down syndrome. Many people cite the statistic that 92% of women who receive a prenatal diagnosis of Down syndrome abort their child. I have read that this is an old number based on a limited study. Dr. Brian Stotko, one of the leaders in Down syndrome research today, reports that 75% of women with a prenatal diagnosis aborted prior to the new non-invasive tests. The numbers are mind-boggling. (Who are these women, by the way? Where do they live? Do I know any of them?)

I just can’t understand how our society got to this point of thinking that people with Down syndrome are not worthy of living because they have Down syndrome. Why is that for us to decide?

And I call B.S. on the reasons people give for aborting. I acknowledge that it is my opinion, but none of the reasons are good enough. None of the reasons can justify the action. If a person feels incapable of raising a child with Down syndrome, there are waiting lists of people who want to adopt one. Those people know the secret joy a child with Down syndrome brings.

It would be generalizing for me to say that based on what I experience, I know what all people would be missing. However, I can speak from my own life, and tell you what I would miss if I did not have Kyle in my life.

I would miss Kyle’s affection. My other kids are affectionate too, but when they get to around two years old, the intensity and frequency of kids’ attention wanes. As Kyle has two older siblings, I can say this from experience. At four years old, Kyle requires a hug from me immediately in the morning. Whether I or Daddy wake him up, he demands the hug from me. When Daddy carries him into the kitchen, he lunges out of Daddy’s arms and into mine. What a way to be greeted every morning! Oh, how I appreciate that one little gesture every day.

I would miss Kyle’s enthusiasm. I have never known a kid to get so excited every time he sees a bus, every time a song ends and a new one begins, every time Elmo appears anywhere, every time he accomplishes the tiniest thing, every time his parents-siblings-grandparents-friends-teachers-bus drivers-doctors-nurses-therapists walk into the room. We rejoice so many times a day, over so many things, because he works so hard for each achievement.

I would miss Kyle’s doctor’s appointments. That sounds odd, I know, but I have met so many amazing people through Kyle’s health issues. His doctors are the greatest, and he loves them. At the hospital clinic where we see many of his specialists, we have formed friendships with some of the nurses and we make a point to see them when we visit other specialties. I got accustomed to having someone wisk my glasses-clad infant Kyle away into the clinics because so many nurses wanted to see and hold him. I also have a greater understanding of therapy and appreciation for the incredible dedication therapists have to their patients, all thanks to Kyle.

I would miss Kyle’s special needs bus drivers. Not only are they excellent, but they seem to get as much love from Kyle as he gets from them. When my older son was in 4K, I rarely spoke to his bus driver. I didn’t even know his name. Kyle’s bus drivers are his favorite people, and I get to know each one instantly because part of his comfort with different drivers is knowing and saying their name. It is adorable–there are at least four different people who have driven him this year, and they all have a different-shaped bus. Kyle shouts the name of the driver when he sees the bus, well before the sees the driver herself. Kyle’s after school bus driver has said after letting a car pass her that she doesn’t want anyone interfering with her Kyle time. His bus driver last year told us that driving Kyle and his friend who also has Down syndrome was a life-changing experience for her.

I would miss Kyle’s intense and unconditional love. Unfortunately, sometimes as a parent we have to get used to an older child saying, “I hate you.” I can’t imagine that that phrase will ever enter into Kyle’s vocabulary. The look on his face when I occasionally scold him is enough to make me melt into the floor. One mom, Ellen Stumbo, wrote so beautifully about her daughter’s love: “She Doesn’t Want Me To Love Her Back.” Please read it if you want a greater understanding of the love that comes from a child with Down syndrome.

It’s the love I can’t imagine one single day without. I will take all the challenges, all the delays, all the uncertainty to be able to experience the greatest love I have ever known in this life.

Written by Katie J
for Elysium

4 thoughts on “What They’re Missing”
  1. Absolutely true. I love the wonderful kiddos in my life who have downs. I never see an excuse for abortion. There is purpose and meaning in every life that God creates. Thanks for writing about this sensitive subject and allowing me to see a glimpse of your life with Kyle.

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