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Annabelle’s Window Dressing

posted Friday December 17th, 2010


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Yes Sophie, There Is a Santa Claus

posted Wednesday December 15th, 2010

If you are ever lucky enough to get invited to Jana Bommersbach’s Christmas party, go.

Every year, Jana — legendary in Phoenix journalism circles, and beyond — hosts a holiday shindig, complete with the best Santa in town. This year I was at Snow Queen with Annabelle, so Ray took Sophie.

It was a good move.

Afterward, she reported that she did NOT kiss Santa on the lips, and later told her sitter Courtney what she told Santa’s elf (pictured above, right, I believe his name is Snappy): “I have your movie!”


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Proud

posted Monday December 13th, 2010

Annabelle squeezed out a few tears at bedtime last night. I couldn’t blame her — I wanted to cry, too.

Snow Queen was over.

This was her third year appearing on a big stage in downtown Phoenix, in the city’s alternative to the Nutcracker. Her second (and almost certainly last) year as a rosebud, which she and I agree is the best role. She was cranky about rehearsals, nervous about going on stage, bored waiting for  curtain calls.

And beyond ecstatic about the whole thing.

Saturday night — still only halfway through the four shows, happily in the midst of the whole thing — we left the theater late. She pulled the big stage door open ahead of me, and said something so quietly I didn’t quite catch it.

“I feel….”

“Cranky? Grumpy?” I asked, sighing. “Hungry?” All would have been perfectly acceptable.

No, she answered.

“I feel proud.”


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Party Hat

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 the Pig kaleidescope, but by the time we wrote the letter together last week I’d already wrapped the Hanukkah gifts. I didn’t imagine she’d be so picky. But the rules of holiday engagement are very important to Sophie.

I’m glad, because Annabelle’s clearly onto us. She told me that she’d like a thumb piano — the $150 one we saw at the Musical Instrument Museum gift shop. “Oh, Annabelle,” I said, “That’s a lot of money.”

She stood quiet for a moment, then fired back: “So what? It’s coming from Santa.”

I found one (very) cheap on amazon.com. Problem solved. I even found a toy EKG machine (sort of) after Sophie announced that’s what she wants. Sophie asked me to write her letter for her (she dictated) and then made me copy it over, announcing that my handwriting wasn’t neat enough.

Annabelle wrote her letter to Santa like it was just another homework assignment, but she did add a jazzy little drawing at the end.


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Party Hat

Teaching the Christian Kids to Gamble

posted Wednesday December 8th, 2010

I was out for a walk early this morning when an old man in an I Heart Jesus baseball cap tried to hand me some propaganda.

From the Things-I’m-Not-Particularly-Proud-Of category, I’ll admit that I wasn’t very nice. “I am SO NOT INTERESTED,” I huffed (and puffed), rushing past him. “Stop bothering people!”

I was in a hurry. In a hurry because I had to get home and get ready to teach Sophie’s second grade class how to play dreidel.

As I neared my house, turning off Queen and wrapping the cord around the Shuffle, it occurred to me, as it often does, that I’m quite a hypocrite. I won’t take this sweet (he looked sweet) man’s pamphlet, but I expect two dozen 7 year olds to sit rapt while I tell them the story of my own religion’s holiday? (And then teach them all to gamble — go Jews!)

I’m not sure if I rationalized it or if I’m right, but by the time I pulled up to school I’d decided not to feel guilty. This is different. This is simply educating the other kids about how Sophie is different from them (oy — for once not how she’s different in that way) without trying to get them to convert.

Of course, chocolate coins can be quite convincing, even if you don’t mean them to. My mother came along and after dreidel she put on some Hanukkah music and everyone danced. It was a lot of fun.

And it was important. To me, anyway. There are very few Jewish kids at our school. Even fewer than I grew up with. I’m sure I’ve told you this story before, but before Annabelle was born, Ray and I had a talk about her Jewish education. Ray’s a fallen Catholic and I’m a shaky Jew, and he’s pretty down on organized religion in general, but he announced over pizza that night that he wanted our kids to know they were Jewish.

“Better they know than someone else tell them,” he explained. I knew exactly what he meant, and it’s stuck with me ever since. So even though we don’t go to temple (much — okay, not at all in the last year), I go to school and teach the other kids about Hanukkah. It’s something to be proud of.

What does that have in common with the I Heart Jesus guy? I don’t know. I think part of what bugged me so much about him was that he was standing near the huge Chabad electric menorah on ASU’s campus, lit for the seventh night of Hanukkah, one of the few signs of Judaism you ever see in a part of this town where it’s impossible to find matzoh meal at Safeway, and where no one’s bought up the frozen latkes at Trader Joe’s.

What I wanted to say to the old guy was, “Can’t you just give us eight days a year? Do you have to get in the way today?”

Instead, I shook my head and kept walking.

Happy Hanukkah.


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Have Yourself a Merry Little Ernie and Bert

posted Tuesday December 7th, 2010


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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 their pictures? I dunno, I think it looks kinda neat. It reminds me of my childhood in a good way, and not that many things remind me of childhood in a good way. And ok, I’ll say it: It’s hip.

I got to thinking — and giggling — about the whole Hipstamatic thing on Saturday, as Sophie and I sat through Yo Gabba Gabba Live.

For the undoctrinated, Yo Gabba Gabba is like the Teletubbies on acid: imaginary characters dressed up in huge costumes, ready to teach your kids to be nice. And to eat healthy food, not to bite, that kind of thing.

But the thing that sets Yo Gabba Gabba apart is that — with funky bright colors, and guest stars like Jack Black and Amy Sedaris, and alt bands like the Ting Tings — it’s hip. Aggressively hip. Tragically hip? I can’t really say. Maybe, if you don’t have a kid. But if you do have a kid, you’re just really freaking relieved that you don’t have to watch the Teletubbies or the dozens of other kid shows that aren’t much better.

I’ve never seen so many dads at a live kid show, but there they were in their goateed and Conversed glory (moms, too — I spotted a “Yo Gabba Momma” bumper sticker in the parking lot), and for the most part, they looked more interested in the show than their toddlers. To be fair, it can be hard to get toddlers to appreciate live entertainment. Mostly the under-four set just wants to pee or throw up or throw a tantrum.

Sophie was one of the oldest kids and she liked it, but really she mostly endured it, because I told her that after the show, she’d get to meet Foofa, her favorite Yo Gabba Gabba character. Foofa’s “thing” is that she’s happy all the time. She’s pink and puffy and has a flower on her head. I skipped the $10 plastic headband with the white Foofa flower hot glue-gunned to the top, but I did get Sophie a tee shirt, and couldn’t help but hold my own hipster photo session in the parking lot, after the after party. 

Because yes, I paid (a lot) to attend the after party. It was the only way I knew Sophie’d get near the characters, and Sophie’s all about the close encounter. It was pretty lame, but mission accomplished: Sophie got to hug Foofa.

She seemed pretty ecstatic about it. But maybe not.

When I bought the tickets months ago, Sophie was still way into YGG, but lately she’s been all Oliva the Pig, all the time, so while she acted excited (she did put her Yo Gabba Gabba panties on for the occasion — thought of that all on her own), I think she was just trying to make me happy. Come to think of it, she didn’t mention the show once after we got home. Not like her. She was way more excited about the porcelain Olivia tea set she got for Hanukkah that night.

Sophie doesn’t care that Olivia’s not as hip as Foofa. And I haven’t asked but she probably thinks my photos have been looking a little screwed up lately, too.


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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. We’ve never gone a whole year. 

When I realized that the appointment was yesterday — a day Ray couldn’t take her — I thought about changing it. But it’s hard to get in, it would have been another whole month. Neither Ray nor I thought it was a good idea to wait. So I went.  

I take the girls to most of their doctor appointments, but Ray’s been the pointman on the heart, since the very beginning. He took the first call, the one where we learned that although the pediatrician (the one who insisted she didn’t have Down syndrome) was positive there was nothing wrong with Sophie’s heart, there was. She needed open heart surgery when she was four months old. 

Ray’s the one who learned all the terminology, the one who watched them put the bag of ice on our infant’s face to shock her back when her heart went nuts, in the aftermath of surgery. And after the doctors promised the first fix was a good one, it was Ray who called me from the cardiologist’s office when Sophie was four, to break the news that she needed surgery again. That appointment was the one that was supposed to be the last six month check up; after that, it would be every year. But it wouldn’t. We were back at square one.

Now we’re finally at the annual exam mark. A whole year without a cardiologist listening to Sophie’s heart. A year without an EKG. Or an echocardiogram. I was nervous this morning, so nervous I didn’t even notice that I dressed Sophie in hearts — dress, tights, even her Converse have little hearts Sharpie-d on. So nervous I forgot we were past Empty until we were pulling out of the driveway, already late for the appointment across town.

I watched that damn echocardiogram machine, and thought of the first echo, when Sophie was four days old; the tech was stoic, didn’t say a word, kept his gaze from ours. I knew better today than to ask what the red flashes meant. Or the blue ones. I waited for the doctor.

He was all smiles. Sophie is just fine. She has a little leakage, but no more today than she did after the second surgery, he told me. Her repair is “artful,” he said.

I texted Ray, and left the doctor’s office with a big smile — my biggest challenge now to find Sophie an EKG machine for Christmas. (Note to self: Don’t suggest writing letter to Santa while waiting in a doctor’s office with tempting medical machinery around.)

And gas. Damn, we needed gas. I’m quite sure we floated up to the gas pump on fumes; there’s no way I’d had enough gas to make it. A Hanukkah miracle, I giggled to myself, as I stuck my debit card in the machine.

Two miracles.


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Hanukkah Starts TONIGHT. How Crazy Is That?!

posted Wednesday December 1st, 2010


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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 be confused with our fabulous babysitter/nanny/respite provider, Courtney, I’ve pieced together that this one is an undergrad at the nearby university, obviously doing some sort of internship. Sophie calls her “my ASU buddy”. Courtney was clearly a popular name 20 or so years ago, just like Amy was popular 40 or so years ago.)

Everyone in the family read the story, and we all agree it’s awesome. Here it is:

Once upon a time Sophie lived in the forest and met the baby buffalo Courtney. She was so small she fit in Sophie’s hand and Sophie kissed her and hugged her. She grew up into a big buffalo. Sophie hugged her a lot and got on her back with her pets.

One day Sophie and Sarah are fighting at school. Sophie is sad because she is fighting with her best friend. Sophie does not like to cry so she calls Courtney. She has good hearing. Courtney quickly flies to school and Sophie climbs on her back.

She flies to Sophie’s house from the school. At first Sophie was nervous because she was sad. And then she was happy because her hair was blowing behind her. Then Courtney sleeps in the attic and Sophie sleeps there too.

The end


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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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