What They’re Missing

      24 Comments on What They’re Missing

I recently read an informative article entitled “Don’t abort based on MaterniT21.” While the author Mark Leach is 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.

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 purest love I have ever known in this life.



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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

24 thoughts on “What They’re Missing

  1. hummingbird

    A really wonderful blog entry. It reveals the truth about the casual statements that children with Down Syndrome are “so loving”.

  2. Liz

    I have so many things I want to say, but I’m afraid they’ll come out trite. And this post deserves so much more than that. Just such a wonderful post.

  3. Margie

    Katie thank you for speaking so eloquently and clearly to represent so many of us how we feel about our treasured children and the gift they are to us.

    Would love to connect!

  4. terrypetersen

    I don’t even know Kyle yet I feel a beauty in his spirit I recognize in my own grandchild. She doesn’t have a self-centered agenda. Moreover, she has a resilience I have never witnessed in another child or adult. Keep posting, Katie. These truths need to be exposed.

    1. Katie

      Thank you, Terry. “Keep posting” is one of the best compliments I could get… and as long as people keep reading, I’ll keep trying to write compelling articles. Your granddaughter sounds like an exceptional child.

  5. Stella

    “I hate you!” may one day be part of Kyle’s vocabulary. Both my daughters with DS have used it – probably learnt off TV shows. However they both still say “I love you!” more often. Having teenagers who are really proud of and happy to see their parents at the end of the school day (I collected them) is also something I cherished.

    1. Katie

      Thanks for your honesty, Stella. I would rather know that now so I can be prepared down the road. Thank you for sharing! And I look forward to those sweet moments in his teenage years as you described.

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  7. rosemaryheddens

    I knew the statistics were high for aborting after a diagnosis of Down syndrome, but I didn’t realize it was that high. I have been fortunate to have in my own life, a beautiful daughter who at 39 still brightens my life each day. If I could afford it, I would give each couple contemplating abortion a copy of the book Kirstin and I wrote. It is entitled This Little Light of Mine, a woman with Down syndrome shines brightly in the world.

  8. fiercejoy123

    It’s official. I have ignore my own work this morning to read your posts and I am hooked! I keep wanting to turn to someone and exclaim YES!! or “I KNOW RIGHT!” but the room is empty and no one knows I’m not really working at this computer… soooooo I’m having this party all on my own. Thank you. The coolest of beans to you!

    1. Katie J.

      You got a teary, smily laugh out of me this morning with this comment. (I know, right??!) I love that you have enjoyed reading my posts. Thank you so much!

  9. Carole Parsons

    I so enjoy your blog, Katie. You were a wonderful teacher when I knew you so long ago….and I know you are a wonderful mom too!

  10. Catherine

    The abortion decision hinges on the probability of a DS (or other such dx) fetus, and not the actuality. The mourning is the loss of a fetus regardless of whether or not the condition actually was present, and so it should be, not more mourning if it turns out not to be there.

    I’ve never known anyone disappointed that a baby does NOT have such a condition when the pregnancy is continued despite a higher than average or what the parent considers is a high risk for such conditions; high enough to start preparing for them. There is joy and celebration beyond that of the fulfilment of the prediction, and it is a story to be told for years to come.

    Most moms, once they have their child, find great joy in that child. So is the nature of love. BUt there are some who do give up children with certain conditions to fostering and adoption, when they would have kept the babies had the conditions not existed. My friend has adopted several such children from parents who just did not want to raise those babies with unexpected issues. That there are waiting lists now for families for DS babies shows that it’s not everyone who feels that way, and hopefully the numbers change. I think blogs and articles and more exposure will bring about this change, if not doing so already.

    What is missing in the stories are those with older children that need forever care, and how that can work out well. those stories are out there too, but not as many, and IMO, sorely needed, as that is often the worry of many parents who have children who will not likely be able to be self sufficient.

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    1. Katie Post author

      Thanks Mark! That looks like a great post. It probably came up today because I just moved to a self-hosted site from free wordpress.com.


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