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An Important DETOUR

posted Wednesday January 19th, 2011

In light of the events of the last week and a half, I decided Saturday to get a little bit brave myself. Nothing by comparison, of course, but this was big for me. I sat for two hours and stared at adults with developmental disabilities. Don’t worry, it was entirely appropriate — a production by […]


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Sophie’s Got a Gun….

posted Friday January 14th, 2011

For the last day, I haven’t been able to get the tune to the Aerosmith song “Janie’s Got A Gun” out of my head. But in my head it’s: Sophie’s got a gun…. I was interviewing a lawyer yesterday who does a lot of work on behalf of the mentally ill, and we were talking (because […]


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Magic

posted Monday January 3rd, 2011

My feet will never be the same. But it was worth it. I survived four days at Disneyland — including two 12-hour-plus marathons — at a time when the Happiest Place on Earth was also the busiest, and felt like the coldest. Still, I can hardly complain; despite the forecast, it was sunny. We drove away […]


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The Down syndrome Immersion Project

posted Wednesday December 22nd, 2010

The other day I visited Sophie’s classroom. That’s not so unusual (though I’ve not been as good about it this year, I must admit). But I was halfway to the parking lot afterward when I realized that for the first time ever, my daughter didn’t sob when I left. It’s been a not-so-nice byproduct of […]


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From Latkes to Letters

posted Friday December 10th, 2010

The transition from Hanukkah to Christmas is a tough one. On the seventh night, Sophie opened her gift — an Olivia the Pig kaleidescope — shook her head and handed it back to me. “This is for Christmas,” she said. And then refused to play with it. True, she did ask Santa for an Olivia […]


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Yo Gabba Gabba, Yo Hipsta Hipsta

posted Monday December 6th, 2010

The other day, a dear friend observed that my photos on GIAPH have been looking a little funny color-wise lately. I explained that I’ve been playing with an iPhone app called Hipstamatic. It makes your pictures look grainy, off-centered and miscolored, a la old snapshots from the 70s. Why, you ask, would anyone want to screw up […]


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Hanukkah Miracles, Large and Small

posted Wednesday December 1st, 2010

The nurse looked hard at me, then at Sophie. “Doesn’t her dad usually bring her?” she asked. “Yes,” I said. “He does. But he’s out of town today.” I thought it was sweet that she remembered Ray, since it’s been a whole year since Sophie’s last cardiologist appointment. A YEAR. That’s big in our world. […]


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Friends

posted Tuesday November 30th, 2010

Christmas came a little early last night, when I pulled some treasures out of the bottom of Sophie’s backpack. First, there’s a beautiful (albeit crumpled) drawing made by Sophie’s BFF, Sarah. And then there’s a story by Sophie and Courtney. (Several times this semester, Sophie’s brought home sweet notes from someone named Courtney. Not to […]


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Thank You, Sophie

posted Thursday November 25th, 2010

I don’t watch E.R. anymore. Mostly because the show went off the air a couple years ago, but even before that, I stopped because after Sophie’s first heart surgery, I couldn’t stand listening to the actors scream medical terms over the bodies — even if it was gobbledygook. Medical dramas were no longer an escape; […]


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Cornucopia

posted Wednesday November 24th, 2010

I don’t want to look a gift cornucopia in the mouth, but the photo above (even cockeyed, I’m not sure why it went vertical when it’s supposed to be a horizontal shot) seems to embody some of the problems we’re having in second grade. This came home with Sophie yesterday. I recall something similar — […]


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My-Heart-Cant-Even-Believe-It-Cover
My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
Changing Hands Bookstore
. For information about readings and other events, click here.
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