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A friend forwarded me the link to this piece today.

“I’m sure you’ve already read this,” he wrote. “But just in case.”

I hadn’t. Am I glad he sent it? I don’t know. It kind of pissed me off, to tell you the truth. And the more I think about it, the madder I get. The question is insulting, condescending, cute — should I go on?

To even ask the question, “Is it harder to have a child with Down syndrome?” is to imply that it’s politically incorrect to say, “Why yes, by golly, it most certainly is!”

Of-freaking-course it is. It’s harder. Some days, maybe not. But most, for sure. It’s also completely awesome to be Sophie’s mother. It’s a total privilege.

And we should be able to live in a world where both things are true.

All that said, I’ll admit that I completely get the question. I remember exactly where I was sitting when I told my dad I’d decided against the amnio.

“I don’t know, Ames,” he said in a gruff voice, then offered the only piece of advice I recall him ever offering me, my whole life — other than the time he got mad at me for ordering butter on my popcorn at the movies.

“Those kids are a lot of work. What about Annabelle?”

So yeah. I get the question.  I just (sort of) wish my friend hadn’t sent that link.

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Tags: Filed under: culture, Down syndrome, motherhood, sisters by Amysilverman

9 Responses to ““Is It Harder to Have a Child with Down syndrome?” Um, duh.”

  1. Yeah, that mixed blessing. Thanks for expressing it honestly.

  2. I dunno- she’s the only daughter I have so it’s hard to compare. It kind of reminds me of when people say to me- Oh, you must be so special to do what you do (work with mentally ill folks) and I always reply that I couldn’t do what they do if they paid me millions! I do what I do because I’m not good at anything else! Feels the same to me re: raising my daughter with DS.

  3. Just do yourself a huge favor and DON’T read the comments.
    Sigh.

  4. Amy, there is one redeeming thing about the article. She points out that the difficulty comes when the child brushes up against the world. Her point is burried late in the article, but it’s an important one.
    I’m sorry that i did not take Maya’s advice, I actually read the comments but I only could manage 1 and a half before I burst into tears at the hatred towards the author pondering her question. I did not see her as preachy. I felt at times she was only skimming the surface, nicey nice and all. But I enjoyed reading her ponderings. What struck me was how angry I got at the comments, I realized I had judgements of my own, and I remembered somethign in the article about us being interconnected. I guess that’s two redeeming points in the article. I think questions like that (no matter how dumb on the surface) help educate people like me who do not have chidlren with DS. I never realized how ridgid and polarized (on the underlying question of screening) we are as humans. And that judgement must carry itself through in the way we interact with our children (with or without DS) preventing us from seeing that soul that has been born in that body that is in front of us.

  5. right, yolande — my point was that before i had sophie, i had no idea. so it’s worth posing, i suppose, but i’ve got to say that i’ve found lisa belkin (the nyt columnist who posted the piece) to be a little crass before — she had a misleading headline about a pill to cure down syndrome a few months ago — and i feel like again she’s being simplistic and inflammatory. then again i’m in the middle of the DS thing so i have no perspective whatsoever. i think this subject is so incredibly charged and as someone who might have had screening (and who knows what else) under other circumstances i try hard not to judge — i’m guessing that’s what readers are accusing the author of, i won’t read the comments per maya’s advice!

  6. Amy, I think you are doing the right thing to avoid the comments. I’m not emotionally charged on the subject and they disturbed me.

  7. Personally, I don’t think it is a very interesting question.

    Could we make up our own questions instead? Oh, let’s do.

    Is a child with DS capable of bringing love into the world?

    Is a child, or adult, with DS capable of living a life that is wild and precious? (Thank you Mary Oliver for inspiring that one.)

    And I’ll throw in a quote for good measure:
    “One fears that the dynamics of modern society point towards the practical rather than the spiritual. But I think there will always be individuals who will carry on the great tradition of the prophets and poets. I have such a fierce conviction about the value of existence, the importance of life, that I know there must be many, many others who feel the same way, and will always be here on earth. And that gives me hope.”
    Stanley Kunitz.

  8. I like the comment “I’m not sure why the concept that a ‘good’ or rich life is an ‘easy’ life is such a prevalent belief in our culture.”. Odd that many seem to think that post is about abortion rights- folks love to make parts of life into a cause! I read the article and I liked it. I’m no more worried than my own mother about my daughters future (but she has an anxiety disorder:) and I am not going to miss an empty nest- love her to stay with me forever. Kayli is 11 and yes, getting older is different but a burden- not a bit. My own siblings had more Dr’s app’ts than she does with ear infections and allergies and do you know she is sick with colds much less often than other kids. All children are individual in their needs and a diagnosis doesn’t change that. Believe me- I work with adults who have virulent and severe major mental illnesses, onset often between 18-30. Down syndrome seems like a picnic in comparison. I imagine the parents of some of my clients feel gypped that they had what appeared to be a “normal” baby and child and expected smooth sailing all along!! Do you know what I mean?

  9. [...] keep thinking about that New York Times blog post. You know, the one with the question. I have not, per Maya’s advice, gone back and read the comments on it. But I’m humbled, [...]

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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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