Archive for April, 2016

Mars is your oyster

Last month Eliana got a leg brace that we hope will straighten out the bowing in her leg. We call it her “dancing leg” and she’s really taken to it well. (That is to say she leaves it on if you can sufficiently distract her from that cool invention we call Velcro, and she can even get around pretty well, thanks to the bendable knee part.)

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But, I told Hank, it seems like another NJ tube: The NJ tube was the feeding tube that was taped across Eliana’s face and snaked down her nostril into her intestines. It was a clear sign to strangers that there was something wrong with this baby. And although we saw past it, we were never sure who else did, and it was always a surprise, among friends, family, and strangers, who’d be OK with it.

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We spent a lot of time outside playing on the springlike days we’ve had recently. Shira’s been learning about the different Native American tribes and how they lived and she likes to gather sticks and put them in her wigwam. When the three of us were out in the yard last weekend, I kicked aside a big stick as we were trooping around three abreast.

“Hey, that’s my stick,” Shira yelled.

“Ugh, they’re all your sticks,” I replied and the conversation devolved into what was Eliana’s in the yard and what was Shira’s, ending with Shira declaring, “I call the world, you get Mars.”

That was the best part of the day, so wonderfully ordinary. That bit of “I’m the big sister and my way goes” juxtaposed with the little sister who’s clueless that there even is another way and isn’t the big sister’s way best?

Have you read the article “Welcome to Holland?” It’s a short, metaphorical article that Emily Perl Kingsley, a writer for Sesame Street, wrote about having a child with a disability. You plan a trip to Italy and then–bam–end up in Holland.

Shira’s dig about Mars for Eliana immediately reminded me of “Welcome to Holland.” We’re already in Holland. Let’s set our sights on Mars.

You know the saying “The world is your oyster?” As much as I hate Shakespeare (It’s from The Merry Wives of Windsor) it’s a fitting phrase for any parent, especially one whose child has challenges.

I wonder if they have oysters on Mars? We’re up for the journey; I guess we’ll find out.

April 4, 2016 at 12:40 PM 1 comment


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