Some questions I get asked.

Since having Daniel, I’ve noticed that there are two questions I get asked often.

First: Did you know he had Down syndrome before he was born? And no, we didn’t, but really? This question is irrelevant.  It wouldn’t have changed the outcome, nor would I have been more prepared for what having him would be like. You know how you don’t REALLY know what it’s like to have a baby until you have a baby for the first time? That’s what it’s like to have a child with Down syndrome. You can read all the books and listen to other people’s stories all you want, but until YOUR child is here, you aren’t gonna know what it’s like.

Sometimes I think people are asking if I “knew” he had it, asking more about my intuition than whether or not we did testing. And yes, I worried about Down syndrome specifically. And those worries were completely unfounded- I had no reason to think he would have Ds. And yes, I knew immediately when the NICU nurse started asking questions that she would tell us they suspected Down syndrome. Does that mean I knew ahead of time? Not really. Does it matter? Again, not really.

The second question is: Will he always live with you? And the answer is: Maybe? But who knows if ANY of their kids will always live with them? I mean, I got asked this multiple times while we were living AT MY PARENT’S HOUSE. Granted, we weren’t living there forever, but STILL. You just don’t know what the future holds for any of your kids.

Interestingly, I am almost NEVER asked outright if he has Down syndrome. I’ve been asked maybe twice? People will start conversations about him and make comments like “they’re such angels” or “they’re all so sweet” (which, let’s not generalize, mmmkay?) so I know they THINK he has Down syndrome, but nobody wants to ask about it. I suppose they don’t want to offend me by asking, but Down syndrome has a pretty specific set of physical characteristics. It’s not hard to see if you know what you’re looking for. And I think MOST people recognize it! Anyway, just an observation.

 

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10 thoughts on “Some questions I get asked.

  1. It’s interesting to me, the things people will or will not say and ask. For me it depends on the person. 😉 I had a lady at church ask, “What’s wrong with Tate?” I still can’t really talk to her. Others have more tact, some pretend like nothing’s wrong. (FYI – he has Chilhood Speech Apraxia. It has come with other physical delays as well. Everyone thinks he and Millie are twins. Nope – he’s 5 and she’s 2 – just because they weigh the same, sheesh.) I always find comfort on challenging days in a Conference talk given in October of 2013. “Stellar spirits are often housed in imperfect bodies.” Russell M Nelson

    PS – how are you enjoying Kansas? We may visit the in laws in March. I’d love to see you then!

  2. This is all so strange to me. I could tell Daniel had Ds immediately, although I think it’s more of a scale, really, right? There are some Ds children that are (hemming and hawing here at wording) more disabled than others, right? I don’t have any experience w/ Ds and I wouldn’t presume to know anything about your life or your challenges with his development but he is so amazing. He’s still on my happy wall at work, right above my computer so sometimes I see his smiling face even more than my own children’s photos.

  3. I would love to hear what kind of questions you would like to be asked or what language would be best. We have invasive questions because of adoption and I know our friends and family appreciate hearing how they should ask questions, what questions are reasonable, etc.

  4. I get asked all the time about whether we knew before Pacey was born or not too. But…here’s the thing: I ask it too! I’m interested. I like to try to get a sense of what people’s experience was and how they came to understand and accept Ds in their lives. Maybe I get a free pass because I, too, have a child with Ds, but maybe not? I think about things like this all the time because I personally really dislike the snarky “10 things never to say to a parent of a child with X.” Maybe I’m naive but I feel like in my experience most people who ask do so because they want to engage and I’d like to believe it is well-intentioned. Sure it is often done imperfectly, but I’d rather people ask than give us the side-eye and stay away. I also find that while I have a pretty well-honed ability to tell who has Ds and who doesn’t, I never ask/comment outright. I usually try to leave a very obvious opening to share or discuss but I live in fear of making a bad assumption. It’s all so very tricky…

    • I don’t mind the question so much, and I don’t mind sharing my story (I like to even!) but I feel like “when did you find out?” leaves more opening to tell the story rather than explain yourself. (I’m planning on blogging more on this topic later! And I’m with you- not a fan of those- Things Never to Say lists.)

  5. Pingback: Back to the questions | van de Blog

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