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.)
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.
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.
|For kidney disease awareness month, I’m sharing this photo slideshow of children, including Eliana, who have chronic kidney disease.|
|Customize a free slideshow design|
March on over to BlogHer and check out the post I wrote about my ambivalence toward Feeding Tube Awareness Week. Enough with the G tube already! And the pumps that keep breaking, and the bags that clog, and the extensions that I can never clean well, and the syringes that we spill from…
You might be wondering how things are going recently. Here’s a taste of my past few days:
Had a horrible cold since Friday (Amy had it last week).
30+ inches of snow. Technically not more than they forecast, but only because they kept changing the forecast as the snow got deeper.
Snowblower worked Saturday..but not Sunday. Lots of Tylenol in play.
Dropped my tablet, breaking the screen and on/off switch.
No nurses the last two nights (see snowfall, above).
When we went out in the snow Eliana fought the sidewalk, and by the look of her upper lip, the sidewalk won. (Here’s one of the happier pictures from the afternoon)
But in the midst of all that Eliana had some time teach us a lesson about what “childproof” does…and doesn’t…mean. Guess we don’t have to worry about her mental acuity and whatnot. Checkout the video.
I wrote a post about baking as stress relief over at Kveller. Check it out!
“How do you give the past a human voice without betraying it or making your reader furiously impatient?” Hilary Mantel asks in the Wall Street Journal. Mantel, author of the Thomas Cromwell novel Wolf Hall, describes what many historical fiction critics and authors have struggled with–how hard it is to strike a balance between setting the tone and keeping a dramatic pace for today’s readers, especially with dialogue spoken in an earlier age. About halfway through Angels at the Gate I got impatient with the lack of contractions and started speed reading, but I’m glad I wasn’t so furious that I tossed the book aside.
It tells the story of a girl in Abraham’s tribe masquerading as a boy in her father’s caravan, a girl who grows up to become Lot’s wife.
When the caravan first visits Sodom, you can smell the city. The nomads visit at a time when the Dead Sea is belching stench along with the valuable pitch that sustains the city, and the smell lingers and contrasts with the spring celebrations. You feel the wide gulf between life in the city and the nomads’ life. Thorne lends the same sort of visceral realism to the characters, like Lot, whose face comes alive in the book and looms a little too close for comfort.
Although I wished for smoother dialogue and fewer sidetracks, the plot drew me in and the characters, including the saluki Nami, won me over.