Why I Won’t Stop Thinking About My Daughter’s Extra Chromosome


We saw a specialist right after KC came home from the NICU who had a lot of important things to say. But out of everything he told us, only one thing stuck: He told us to mark down the date we go a whole day without thinking of KC’s extra chromosome. He said this would be a “good day,” meaning we were finally starting to see her just like anyone else.

I couldn’t put my finger on the reason why that comment didn’t sit well with me, and I’m not sure why it keeps replaying in my mind over two years later. I think I get what he was saying, that a day would come when Down syndrome wouldn’t be the first thing we think about our youngest daughter. 

I’ve thought about it so many times over the last two and a half years, I’ve even tried to figure out how often I actually think about her extra chromosome. Are my typical thoughts so different now that we have KC? Husband. Coffee. Messy house. Meals. Coffee. Dishes. Laundry. School. Coffee. Are the kids all dressed and bathed today? 

Do the words “Down syndrome” just randomly pop into my head? 

Do I somehow subconsciously think, “Oh my KC, how precious, Down syndrome, what time does she need to be at therapy today, you know…for her Down syndrome?”

Surly I don’t think about it every day? Do I?

And how can I think about not thinking about it without actually thinking about it?! 

And if I do think about it, what’s so wrong with that? 

Then, I go back to that comment.

I obviously want inclusion for KC. I want her to always know without a doubt how beautifully she was created. I don’t want someone else to miss out on experiencing the person within her because they can’t look past a diagnosis. So what is my issue with his comment? Don’t I write because I want others to see her in the same way? 

As I’m sitting here looking at pictures to hang in the local OB-GYN’s office, with the hopes of showing someone the joy a very surprising diagnosis brought us, it finally occurs to me: I want people to see KC has Down syndrome. I don’t want people to pretend she’s someone else. I don’t want to mask this amazingly unique, small part of who she is. I don’t want people to see her exactly the same way they see everyone else. What I want is for her to be treated exactly the same way as everyone else. Inclusion, for me, is not about treating everyone the same because you see them exactly the same. It’s about learning to treat everyone the same in spite of their differences while learning some wonderful things about each other along the way. 

So I say, Mr. Specialist, while I don’t spend my days pondering over genes and chromosomes (And trust me, I’d LOVE an excuse for why I couldn’t finish laundry or the dishes today!), I’m not sure I’ll be as proud as you think when I realize I’m not thinking about KC’s extra chromosome. That little bit of extra has managed to teach me far more than I ever imagined, and it deserves some serious credit.

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A version of this post originally appeared on Good Things Come in 3.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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