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“A Wonderful Moment”

posted Wednesday March 16th, 2011

And in the end, the love you take/ Is equal to the love you make. — The Beatles

One morning last week, I woke up before Sophie, who had made her way (as usual) into our bed sometime in the night. Typically, Sophie is a restless sleeper, except for when it’s time to get up. I lounged for a few extra minutes, absent-mindedly running the back of my index finger up and down her cheekbone. I looked at her sweet face and it occurred to me how comfortable I am with this little creature.

And how weird that is.

Not long after Sophie was born — while Ray was busy reading medical textbooks and I was busy trying to think of something else — he said something about our younger daughter that I’ll never forget.

“You know, Sophie really is some sort of miracle,” said the least religious person I know. “She shouldn’t even be alive, not really. Every bit of her is different from every bit of us. She’s this totally unique being.”

Not exactly. Down syndrome, I know today, is one of the most common (if not the most common) genetic defects. Not that I’d ever met anyone with it before Sophie was born, as you know if you’ve read this blog much at all.

Before Sophie was born, and for a good long time after (and sometimes even now, depending on the situation) I was terrified of people with disabilities. When she was born, I didn’t wonder if I’d ever consider her just a member of the family; it didn’t occur to me that I ever would or could.

Stroking her little, other-worldly face the other day, I realized that now I do.

I’ve expressed similar sentiments in the past on GIAPH, but there’s a purpose today. Last week I put up an entirely unremarkable post about something that happened in Brownies, and in return I got the gift of a lifetime, in the form of a comment from Elaine.

Basically (as far as I know) there are two kinds of people who read this blog: People I already  knew before I had Sophie and people who have a specific interest in Down syndrome — maybe they have a kid with DS, that kind of thing.

I treasure both. Truly. I am in awe of the fact that anyone reads any blog any more, let alone mine, and I’ve learned so much from reading the blogs of other parents with kids with DS, something I never thought I’d do.

Elaine doesn’t fall into either category. She found my blog simply because she has a blog about her own daughter, who is named Sophie, and wordpress guided her to mine. Thank you, wordpress. Elaine is so cool! An American Studies professor, a rock climber, an adventurer in ways big and small. I think I can call her a friend. I hope so.

Elaine, to be completely and brutally honest, is my “target audience”  for Girl in a Party Hat, and for everything I wrote about Down syndrome and all that comes with it. That sounds so tacky, but it’s true. I write about Sophie for lots of reasons, but mostly because I hope there’s one person out there who knows nothing about Down syndrome who might stumble on my work and learn something, and not be afraid.

Now, there’s no doubt that Elaine is a far more evolved human being than I am, but still, I think you get the idea. At least, you will when you read the comment she left me last week.

… I have been meaning to write you a note myself. Because I’m 37 (nearly 38) and pregnant, my midwife has been encouraging me to get the non-invasive tests to check if my baby has the likelihood of chromosomal abnormalities. When she first asked if I wanted this, I said, “What would I possibly do with that information?” And then I realized the obvious answer: “I would phone up Amy Silverman and get even more tips than I’ve already gotten from her about how to parent a kid with Down syndrome, and I’d get myself as prepared as I could be for the adventure to come.”

The tests came back negative, so my chances are down to 1 in 11,000 or so. But the nice thing was, it didn’t really matter. Because reading your blog has made me think that parenting a kid with Down syndrome IS an adventure (“the best thing that ever happened to you,” I think your profile used to say), not an easy adventure, but certainly one that I could embark on, knowing already to expect heart problems and social-service-negotiations and IEPs and struggles around friendships and finding fashionable eye-glasses and everything else you write about. It’s an enormous demystification you’re doing for all of us.

What could have been terrifying suspense in all those visits to various doctors’ offices (drawing blood, measuring the fat-folds in the back of the fetus’s neck, drawing more blood later…) became far less terrifying, because your blog has made Down syndrome seem so much less foreign to me.

I know I’m not quite your intended audience, if such a creature even exists. I don’t live in Arizona, don’t have a child with Down syndrome or any reason to care particularly about it — before this pregnancy at what I’m now learning is apparently old age. I just happened on your blog and loved your writing and your attitude.

And it turns out I’ve been learning a whole lot all along, from you, without realizing it.


No, Elaine. Thank you. More than I can say. As my sweet friend Heather put it, that was a wonderful moment.

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Tags: Filed under: culture, Down syndrome, family by Amysilverman

7 Responses to ““A Wonderful Moment””

  1. you really do amy…you really demystify life with a DS child for the rest of us. I appreciate that you are so raw with your emotions as well, it makes me….gosh I’m just not sure how to put it into words….it just takes all the judgment out and leaves it open for understanding and working through emotions (if that even makes sense…)

    One of the things that first struck me about you is what a devoted mother you are, how much you really love your daughters (& ray too, I’m sure!). Your day job puts you into all sorts of interesting situations, it would be so easy to get wrapped up in all of that, but you don’t. It seems that your family keeps you grounded and focused.

    thank you for writing and letting the rest of us read along :)

  2. I am sharing your “wonderful moment” – on all levels.

  3. I don’t fall into either category myself … I don’t have a child with DS and I didn’t know you before – although I also grew up here (went to Saguaro HS) and worked for different publications so I’m surprised our paths didn’t cross somehow. I found your blog through Mothers Who Write (I used to work with one of your MWW students) and really enjoy it! I love your “mom humor” and touching stories. Thanks for writing!


  4. I’m so happy for you Amy! I never doubted for a nano-second that you were made exactly for Sophie and her for you! I personally feel like my child is magic (and I am not a sentimental type of person at all). You are an inspiration.

  5. Awwwwww. I am honored, my friend, that you put my comment in a whole post. I’m honored that my thank-you note gets greeted with such thanks from your whole community of readers.

  6. [...] Mar I left a comment on Amy Silverman’s blog the other day, and got more than a dozen heartfelt comments in response. Amy called it “the [...]

  7. I absolutely love this. I would say one of my biggest hopes in going about living my life with my chromosomally enhanced little boy is to show casual observers (as well as friends and family) how utterly “normal” our day-to-day is, and how my son and I are nothing to be pitied. I’d like to think that we lessen the anxiety around those tests for some people in this same way.

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