“Mommy, why do I have Down syndrome?”
posted Wednesday March 7th, 2012
It came, as most of the hard questions do, from the back seat. This one was, perhaps, the hardest of all.
“Mommy, why do I have Down syndrome?”
Sophie and I had just left Special Olympics practice, so I wasn’t completely surprised that the topic came up — we’re almost never around groups of people with Down syndrome, and there were a dozen or so out for track and field that afternoon. I just expected that when the first questions came, they would be more of the “what” or “who” variety, rather than “why.” I will admit that I was completely unprepared. She’s only 8. I figured I had a few years.
“Uh, um, err–” I sputtered. “I don’t know.”
Before Sophie could protest, I followed up with all I could scrape from my end-of-the-day-tired brain.
“So when you were just becoming a baby, some science happened and it made you have Down syndrome.”
That was terrible, but it seemed to satisfy her.
“Oh, like the science fair!” she said, excited, and quickly changed the subject with a question I honestly can’t recall at the moment, something on her current rotation: “When can I get a Monster High doll?”; “When can I have a sleepover with Gaga?”; “Why isn’t it my spring break yet?”; “How many days til my birthday?”
Back to comfortable (if slightly annoying, after a dozen times) territory. I turned up the Disney channel on the radio and let the whole thing play out in my head, again and again.
“Mommy, why do I have Down syndrome?”
“Well, Sophie, it’s because Mommy was selfish and waited til she was 36 years old to have you. You have an old mom with old eggs.”
“Oh, Sophie, I’ve wondered that myself. Perhaps the universe was trying to punish me tell me something.”
“You see, Sophie, you have a genetic condition called Trisomy 21, in which you have an extra 21st chromosome, which affects just about part of you. If you’ve got an hour, I can start listing the many ways.”
“Fuck if I know, Sophes.”
Annabelle got in the car, and asked her sister how Special Olympics went.
“Good!” Sophie told her.
“Hey, Sophie, did you notice there are a lot of people at Special Olympics with Down syndrome?” I asked.
“Yes.”
“What do you think of that?”
“I like it.”
“Why?”
“Because they are nice.”
Later I told Ray about the conversation.
“You know,” I said, “maybe it’s like meeting someone from your own planet. Maybe she feels really comfortable around them — like they are her people.” Maybe she wonders why life is so hard all the time, why she doesn’t quite get it when she’s around us, her nuclear family. Maybe these people are really her family. Does she think that?
“No,” said Ray, who’s read more (as in, anything) on the subject than I have. He says people with Down syndrome are not really capable of that kind of thinking.
I’m not so sure.
I’d much rather leave an affirmation here, but that’s tough for this post.
Our egg was only 25 years old; I surely do not consider 36 to be a selfish risk, so I’d yank that thought from your mind if I could.
Our high functioning adult with Downs has been quite aware of his difference since his early teens. Once out of high school, he has adamantly refused any “special” activities and acquaintances, preferring “normal” community and people. He becomes grumpy and sour when his predicament is brought up in conversation.
The grumpy part is due, at least in part, to the ambience of his particular living situation (Okay, he lives with his mom, whom the world is usually oppressing in one way or another.)
From your writings, your girls are a good bit cheerier about life and such. The Sophie you describe does and will grasp the differences, but I suspect without the gray cloud that hovers over my son.
I’m encouraged about all this for all of you.
Amy, I am with you on this one.
I remember taking Madeline to Walmart where (not surprisingly) she saw a door greeter who just happened to have DS. The two met eyes – then held them as we walked away.
I remember coming home, telling John, that there was some “magical connection” (Which, even as I type this STILL has the hair on the back of my neck stand).
Yes, I believe that, somehow, they know they are unique – and, seeing others like them, makes them feel connected. Why wouldn’t they feel this way? Don’t we all feel “connected” to people who look like us, act like us, wear the same clothes as us? If the general population calls attention to the “faces” that our babes wear, wouldn’t it make sense that THEY recognize their own face on someone else? Stick with what you believe. I am sure Ray is wise in a wonderful way but, from one mom to another, we need to find hope in the littlest corners of our own minds sometimes.
I won’t speak for all people with Ds, but I totally disagree with Ray on this one- inspite of what he’s read. It’s not just hope- people with Ds are capable of knowing. There’s just to many ways of knowing- whether it can be articulated or not- why I stalk every almond eyed faces I see in public, I don’t have words for it when it happens- but there is something there. They’re capable of knowing and reason. I’m also with you on Fuck if I know Sophes…I think it’s the most accurate…
I am not looking forward to this question. I think your off the cuff answer to her was actually the best one
yup, “some science” sounds good to me. my wife and I have been wrestling with how to talk about Ds both with Archer (who has Ds) and how to introduce the topic to his new little brother when the time comes…
Amy, if you or any of your readers have any resources (kids’ books and the like) that you can recommend, I’d love to hear about them.
Interesting question about books — you know, I’ve not found any kids books about DS that I think would work for teaching Sophie about it. There are some sweet books (my favorite is “My Friend Isabelle”) that I think are great to show the kids’ peers…. But they really are about acceptance of kids with differences, not directly about DS. And there are some that are TERRIBLE. I’m sure there are some I’ve missed. Hey, big congrats on the upcoming arrival — I’m terribly behind on my blog reading, clearly! I think it will be super easy for Archer’s sib — Archer will teach him from day one. I really don’t think there’s a book that could teach Annabelle anything she doesn’t know already, save some detailed science. She could write the book at this point — I am biased but I think having a sibling with DS has made her infinitely wise on a lot of levels…. And patient. (Usually.)
amy- please don’t feel like it was your “old” eggs. my daughter was 19 when she had my gdaughter emma- who btw is the light of our lives. i know everyone seems to say this, however- she has opened the eyes and hearts of our entire family. p.s. love your blog!
My son, Nick, is 9 and been in a self contained class for 3 years. Last year was the first time he had any classmates with DS. Out of his class of 11 there were 4 boys, including Nick, with DS. He bonded immediately with those 3 other boys. I don’t know if it was that he’d finally got to that developmental point or what. But he still talks about them even tho 2 of the 3 are no longer at his school or in his class. He ran into one at a SO bowling event and talked about nothing else for days.
I love this post! My daughter has Turner syndrome, but looks and behaves/learns like her typical peers (she is smaller than most 10 year olds though). Her ‘differences’ come up when we discuss things like becoming a mommy (her lifelong dream). Her syndrome makes it very unlikely that she will ever get pregnant or give birth. When these conversations occur she will say “Why did I get Turner syndrome?” I try to be philosophical about it with her, using pat phrases like “God makes us all different but special”, but I’d love to throw in a “Fuck if I know, Kate”.
Kris: I so relate. Sophie is obsessed with being a mom, too. Annabelle not at all (not obsessed — she talks about having a couple kids, but never was into baby dolls and all the accessories like her sister, who recently told me she’ll have nine kids).