One Brave Mom

I met the most remarkable woman yesterday.

We’d been emailing for weeks (months?) about our daughters. The woman lives in town, friend of a friend of a friend.

My daughter is 5; we found out she had Down syndrome when she was several days old. Still, I remember the time before the diagnosis felt like eternity.

This woman’s situation is worlds apart. She learned her daughter had Down syndrome when she was 3 years old.

You didn’t misread that.

I might have made a quick reference to this after I first learned of it — so forgive my redundancy — but the story is one I can’t stop replaying in my mind.

The baby was born to young parents (unlike me and my “geriatric maternal age” at 36) so there wasn’t the hint of a problem. And Baby Girl was perfectly normal, happy, healthy. But by the time she was 2 and a half, Mom noticed she wasn’t saying much. After months of debate and discussion and doctor visits, the pediatrician finally came up with a brilliant idea: a blood test.

Turns out, Baby Girl (now Little Girl) has a relatively rare form of Down syndrome called mosaicism. I’m not Science Girl, but basically it means that where every one of my Sophie’s cells is affected by Trisomy 21, Little Girl’s got “normal” cells along with the kind you see in Down syndrome.

It manifests differently in every case, but in this one it means that Little Girl looks totally typical. She has curly hair. Her mom was amazed to hear that Sophie’s hair is straight, while Annabelle, Ray and I range from curly to wavy depending on the humidity.

“Yeah, I asked the geneticist about it,” I told her, explaining that people with Down syndrome don’t have curly hair. Almost never. “He looked horrified.” (I don’t blame him; my kid was about to have open heart surgery and I was asking about her hair. Shoot me. I like distractions.)

We had the same geneticist, and I remember at the time we saw him, when Sophie was 3 months old, Ray remarked that the old guy seemed pretty bored. Run of the mill DS has to be the most common thing he sees. Yawn.

“Was he fascinated by your situation?” I asked. Oh yes, Mom replied. He kept them in his office for two hours.

Little Girl is getting all the services Mom can muster; she’s about to start pre-school; Mom and Dad have read the books, done the homework. She has stomach and thyroid issues common to DS. Funny, Sophie doesn’t have either. (Not yet, at least.)

But I wonder how Little Girl will match up with Sophie. All kids are different — and kids with DS are no exception — but I have to admit I’m curious. I want to meet Little Girl.

I had to ask. I leaned across my Bento box, feeling (and I’m sure looking) a little nervous. The topic hadn’t been broached.

“Um, so, in your life, have you ever known anyone with Down syndrome?”

Mom shook her head. Me either, I told her.

“Have you met anyone with it, since, well, you know….”

No. She hasn’t.

I remembered how I felt, and how I still feel. I’ve tested the waters with kids who have DS, but I have to admit that I still haven’t truly forged a relationship with an adult with DS. I keep swearing I will. One of my dozens of unkept New Year’s resolutions this year was to volunteer at the local ARC rec center. It hasn’t happened, and I’d like to say it’s only because I’m busy. But it’s also because I’m scared.

I wondered if Sophie was scary, in a similar way. I know she would be to me, if the tables were turned.

There was nothing else to do. I dove in.

“I think you should meet Sophie,” I said. “I don’t want that to freak you out. I think she’s awesome” (I’d already done quite a bit of bragging) “but I know it’s not the same. I don’t want it to be weird.”

She didn’t hesitate. She wants a play date.

In any case, I think I’ve made a friend.  

We hugged goodbye on Mill Avenue where our paths took us in different directions, and I got into my car, shaking my head. She says she was like a cat stuck over a bathtub, resisting the water, but I didn’t see that in this woman.

All I saw was one brave mom.

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4 Comments

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4 responses to “One Brave Mom

  1. In Mosaic DS, the “accident” of one of the chromosomes moving to the wrong place occurs shortly aftr conception (not in the egg), and its effect on the child will be determined by which cell line(s) is/are effected, and the percentage of cells with the extra chromosome.
    The bell-curve of the IQ of kids with mosaic DS is higher, but overlaps that of regular DS. So while some (most) of these children will be smarter than regular kids with DS, some are not.

  2. If you want, we can look at the calendar for the Arc and go together! I used to work there (I did the books). Maybe their Thanksgiving celebration, it’s always fun. And we don’t stay that long, ha ha.

    I’m totally serious about this, by the way.

  3. Amy, your friend Ira Glass only recently storied mosaic Down’s. Check out the podcast. Got to Act One about 7.5 minutes into the podcast. Great story, as was yours.

    http://www.thisamericanlife.org/Radio_Episode.aspx?episode=366

  4. elaine

    amy –
    thank you for writing this…
    it is so appreciated.
    i got the bouncy house – think annabelle and sophie might want to come over soon?
    xo = elaine

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