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What to Say When You Hear My Daughter Has Down Syndrome

What to Say When You Hear My Daughter Has Down Syndrome

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I’m noticing a silence after I tell people that Moxie has Down syndrome. Since I usually “tell” people by writing and the “silence” is them not writing back as they usually do, I could be wrong. Maybe they are just busy.

But I think they don’t know what to say. I get it. I’d be the same way if a friend wrote and told me that her little daughter has Down syndrome… am I supposed to congratulate her? Offer condolences? Ignore it and delve into celebritrash gossip? I might very well not write back, not knowing the best course of action and not wanting to offend.

So I thought I’d tell you what I’d like to hear you say.

I want you to understand that for me, Moxie having an extra chromosome is about the same as her having my fair skin. I’d rather she didn’t, but the fact that she does is far from the end of the world.

There are things to appreciate about having fair skin.

As I learn more about Down syndrome, I’m sure I’ll find things to appreciate about it too. Just as there are things that I appreciate about being deaf (– like the ability to turn off the world – not to be underrated when kids throw tantrums).

Understand that I got the perfect baby for me and that I wouldn’t trade her in if I could. I’ll take the extra chromosome since it’s a part of her package, and I love – no, adore – that parcel.

So just say, “oh”.

Or that you didn’t know.

Or tell me about your uncle that had Ds and that you loved him.

Or tell me your real thoughts about it. I appreciated it when a friend of mine responded to my email about Moxie by saying that one of her greatest fears has always been to have a baby with Down syndrome. That’s honest, and I understand. It was my greatest fear too.

But please don’t say you are sorry because there is nothing to be sorry about. I chose to have this baby and I love her more than my life.

And please, I beg of you, don’t say something along the lines of special people for special babies. Or anything like I’m the perfect mother for her. Or that it’s great that I have this background in disability. Or anything at all about ‘angel babies’. That’s just not part of my faith-pack.

Tell me that you want to meet her, hold her, kiss her plumply marvelous cheeks, gaze into the deep blue pools of her eyes. Squish her delightful little legs and hold her hands. Be just as excited about little Miss Moxie as you are about any other baby. Tell me where I can find a baby-sized tutu (preferably pink), cuz I’m looking for one.

Be happy for me. I got what I wanted.

A sparkly, beautiful baby girl.

PS

– A year later:

We got the tutu

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