C is for Cookie

I took Eliana—who was all sorts of grumpy from not sleeping well last night—shopping because what else is there to do early on a dreary weekday morning when one of you has a headache and the other one won’t stop hollering? (Seriously, if you have any better ideas, please let me know. We’ve already been to the library this week.)
At 9 am, Target and the Salvation Army were open, so that’s where we went. My deal-of-the-day was an oversize husband pillow that looks like it was made out of Cookie Monster, $5.99 from the Salvation Army. (Oh, in case you’re wigged out about bedbugs: I put it in the dryer for 30 minutes on high. Experts say that’s hot enough to kill any bugs and their eggs.) It was worth $5.99 just to lug the enormous Cookie Monster hide, which wouldn’t even fit in the cart, through the aisles of the Salvation Army with Ana yelling “have it, have it,” like she was cheering about the ten-pointer we’d bagged.
“Oh, they gonna have fun with that,” the lady in front of us said at the checkout. Mm-hmm. Cookie Monster may not solve all the world’s problems (ahem, Donald Trump is the presumptive Republican presidential nominee), but he’s not a bad monster to have around when you’re down. Plus he’s tech savvy, as we found out in the iPhone 6 commercial, so maybe he’s following this blog.
It’s a Cookie Monster kind of month—he’ll be at Burger King in a couple of weeks for National Chocolate Chip Cookie Day (Sunday, May 15). Hopefully we can make it there after nap, but if not, we can snuggle on the Cookie Monster pillow with cookies and milk.

May 4, 2016 at 1:44 PM 1 comment

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.)


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.

April 4, 2016 at 12:40 PM 1 comment

Some of my best friends have kidney disease

For kidney disease awareness month, I’m sharing this photo slideshow of children, including Eliana, who have chronic kidney disease.

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March 1, 2016 at 1:07 PM Leave a comment

Do I Have to Celebrate My Daughter’s Feeding Tube?

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…

February 12, 2016 at 1:22 PM 2 comments


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)

In the snow

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.


January 24, 2016 at 8:38 PM 2 comments

Strudel, anyone?

I wrote a post about baking as stress relief over at Kveller. Check it out!

December 30, 2015 at 4:01 PM Leave a comment

Second #Readukkah review

“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.

December 16, 2015 at 12:06 PM Leave a comment

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