Thursday, May 5, 2016

Cri du Chat Awareness

May is Cri du Chat Awareness month. You know, fifth month, fifth chromosome…neat, huh?

My Facebook page is full of parents posting pictures of their beautiful kids from infancy to where they are today, all of them defying the odds that doctors gave, walking, talking, playing, learning.

We live with 5p- syndrome every single day. It’s in the little things, like how hard math is for Olivia. Or how she still needs someone to put her shoes on her (her hands are just too weak to force shows other than flip flops onto her feet.) Tying shoe laces is hard for her, the dexterity needed is just too much.

And yet…we don’t think about 5p- every day. We don’t think about how this syndrome has affect our lives because it just…is. Olivia is. She’s bright, she’s beautiful, she’s funny and sweet. She gets jokes and sarcasm and has the best laugh.

She’s a voracious reader and still loves to listen while I read out loud to her.

We’re incredibly lucky as far as O’s health is concerned. Sure, we’re staring down the possibility of a tonsillectomy coming up but that feels like a rite of passage for her just being a kid rather than a syndrome issue.

I don’t think much about what she can’t do these days. So she can’t tie her shoes…well, she can live in a world without tying her shoes. Seriously, she can.

I think about all she can do. She walks, runs, dances. She sings and tells stories. She’s an excellent typist and can write the best stories on her tablet. She gives the best hugs and at nine years old, all knees and elbows and random lumps, she’s still the best cuddler in our house.

I worry about her being lonely as she gets older because she doesn’t get her peers and I don’t think they get her either. But we’re working on that and it’s going to be an ongoing issue for years to come.

It’s all just part of being her mom. We worry about our typical kids, we worry about our ‘special’ kids. If we were paid for our worries, we’d all be independently wealthy.

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