Party Hat

Once Upon a Time….

posted Monday February 8th, 2010

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I know I just posted one of Annabelle’s drawings last week. I know I’m utterly shameless. I can’t help it. I had to share this one, which she presented me with last night.

I love that she calls herself a “desighner.” I love that she calls me a “writer,” a title that still — after all these years – feels undeserved.

I can’t begin to put into words how that drawing makes me feel. (See what I mean about undeserved.)

I’ll hang Annabelle’s drawing on my office wall and look at it often and hope that someday I’ll do it justice.


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Photo Shoot in the Ladies Room

posted Monday February 8th, 2010

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Saturday was a melancholy day — the one-year anniversary of the last time the girls saw their Grandma, the day we took her to tea at the Ritz.

Of course, the girls didn’t remember the date (ah, to be 8 and 6) but I did, and my mom and I decided to mark the occasion with a celebration. I tried to get a reservation for tea, but the Ritz was booked (apparently someone’s not suffering from the bad economy) so we went to the mall, instead.

We goofed around at Lush and Aveda, and Annabelle tried to explain to Sophie that Barney the dinosaur does not, in fact, reside at Barney’s.

The highlight was a Valentine lunch at a new “female friendly” (really!) steakhouse called Modern Steak. The perfect setting for some pint-sized princesses, and after lunch we conducted a lengthy photo session in the ladies room.

I wish I’d thought to shoot my holiday photo in that bathroom. Seriously. If you live in the Phoenix area, get over there to check it out. If not, you can see it in this slideshow.

I’m not sure what my mother-in-law would have thought of that photo session in the ladies room — she was a pretty polite woman — but I know she would have approved of the girls’ silly grins.

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(Miss) America! America! God shed his grace on SHE!

posted Friday February 5th, 2010

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Just last night at dinner, I was bragging to my girlfriends about Annabelle’s latest creative exploits.

In the past week, she’s created the “Lemonade Stand Fashion Club” (you come to the lemonade stand and describe your dream outfit, then the “designers” make it) and a soap “business” called “Watermelon Cream.” And as usual, ideas for several cake designs have been bandied about. (I do wish her all-girl band, the Bubble Gums, would make a comeback. I haven’t heard about them in a while.)

This morning she took my order for a glitter/rose petal creation called a “Pedal Bookay.” (We’ll need to go to Safeway for roses this weekend, she announced.)  And I noticed a piece of paper on the coffee table, with intricate drawings on both sides, labeled, “A celebrity character.” One side has a “hoola” girl in a grass skirt and hoola hoop, with the caption, “party time baby!”

The second (I hope you can see the details in the picture) is apparently Miss America, being filmed on the red carpet — snapping her fingers, commenting “catchy song” — while a crowd sings, “(Miss) America! America! God shed his grace on SHE!” Members of the crowd are making comments, such as, “It was worth 500 dollars, you know!” and “Go Miss A!”

I picked it up and looked at it and thought, “What I’d give to be inside Annabelle’s head!”

Then I realized I already was.


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Mittens and Gloves

posted Thursday February 4th, 2010

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It’s barely February, but talk has already turned to What Fourth Grade Teacher Should I Request for Annabelle and What Will Happen to Sophie in Second Grade?

The special ed teacher called yesterday — it’s time to schedule the pre-IEP meeting. Let the games begin.

Sophie’s main challenge, as predicted, is writing. I saw it last night when we started working on valentines (granted, it’s not easy for anyone to write on a foam heart with a Sharpie, around Yo Gabba Gabba stickers – she did a darn good job) and I see it in all the work that comes home. Miss Y has finally suggested that it’s time to consult the occupational therapist about an electronic writing device.

Something else to make Sophie different. But I know it will help, and we’ve held off on it long enough.

The special ed teacher was sweet. She talked yesterday about how Sophie has so much to say — sentences to put together, thoughts to express — that she simply can’t get down on paper. I wonder, frankly, if she ever will. (A hard thing to admit, given my profession — heck, and my hobby. I blab constantly! I want Sophie to be able to as well, and not just on the phone — her current obsession, sorry if you’ve been on the other end of that.)

One of the OTs explained a while back that it’s like Sophie is wearing mittens — she just doesn’t have the same feeling in her fingers that typical kids have. Combine that with low muscle tone and other challenges and you have some pretty hard-to-read writing.

Drawing is tough, too, though she loves to do it. (And I do love the drawing she did of herself and Ms. X that I embroidered.) The other day I arrived to volunteer in Sophie’s classroom, and out of the corner of my eye I noticed that the bulletin board had been updated.

I always approach a new bulletin board with a little sadness. How will Sophie’s offering look next to the other kids’ creations? This particular display is (coincidentally, given the whole writing discussion) of mittens — cute, they are punched with holes and hung on string, and as I approached, I made enough breeze that Sophie’s literally flipped over. I had to flip them back to see.

I was pleasantly surprised. Her mittens are BEAUTIFUL (see above) and most important, she created a beautiful pattern and repeated it on each. Very nice. No, not what the other kids did (see below) but lovely in their own way, just like Sophie.

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Things have been pretty mellow lately — nothing really earth-shaking. Maybe (pardon the pun and the too-neat wrapping on this package) — we (sigh — I) need to take the gloves off, make some demands that will push her to the next level.

And maybe I need to increase my expectations. So I’ll be optimistic, for once, and assume that when she gets her new contraption, Sophie will write volumes. I can’t wait to see what she has to say.


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A Wrinkled but Heartfelt Valentine for Ms. X

posted Tuesday February 2nd, 2010

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I’m terrible with surprises. I finished this late last night (thanks to “Worst Cooks in America” — I have a lot to say about that show, but this is not a food blog…) and couldn’t wait to share it.

Ever since I did Annabelle’s drawing of Abbie, Sophie’s been asking me to ‘broider something of hers. So I did. Here is Sophie’s drawing of herself with Ms. X, her kindergarten teacher — and, from the looks of it, our teacher (and friend!) for life.

And, as usual, here’s the back. As you can see, I’m not getting any better. (And yeah, wrinkles are still an issue.)

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Ghost Story

posted Monday February 1st, 2010

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Maybe it was because I was reading a ghost story at the time (specifically, “Spooky Little Girl” – the latest book by my dear friend, the prolific and hilarious Laurie Notaro — it’ll be out in April) or maybe it’s just because I scare easily.

But I literally jumped and squealed when I looked inside a blue plastic bag shoved in the back of a cabinet and found Sophie’s head.

When Sophie was three months old, we finally had our appointment with the geneticist, the guy who was supposed to impart all kinds of knowledge but really didn’t tell us anything Ray hadn’t already researched himself about Down syndrome.

As we were leaving his office, the geneticist pointed to the rather-flat back of Sophie’s head and warned, “You better do something about that head soon!”

Looking back, I can’t believe I listened to him. But I did. We got her one of those $5,000-not-covered-by-insurance helmets to round out her flat head. And turns out, I’ve still got the helmet — and the mold they made of Sophie’s head — to prove it.

I’m not knocking those helmets. One of my writers did a terrific story about DOC bands  – they were invented here in Arizona, and have saved many children with serious cranial deformities from expensive and dangerous surgery.

But I’m not sure Sophie really needed the helmet at all. Which is a good thing, since it didn’t do much for her. To be fair to the folks who sold it to us, she didn’t wear it constantly, as required. Poor baby Sophie quickly rubbed herself a huge “hot spot” (yes, like the kind dogs get — looked just like that) on her head, and couldn’t wear the helmet much at all.

In a way, I was flattered when the geneticist told us to fix her head — even though at the time we were days away from open-heart surgery, and clearly had bigger fish to fry. To me, it meant Sophie was worth something, that it wasn’t okay to let her walk around with a flat head.

Today, when we’re cuddling, and I feel that flat spot on the back of her skull — I don’t think you can see it at all with her hair over it, at least I don’t notice it — I wince, hating that I gave her even a moment’s discomfort with that dumb helmet.

And yet, I couldn’t just throw the thing away. Sophie was fascinating with my find — and played with the DOC band for a while. Then I shoved the mold and the helmet back in the blue bag and hid it away high in her closet. Not a bad ghost to have to confront once in a while, I figure.   

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Party Hat

The Birthday Present

posted Friday January 29th, 2010

I love this story.

Monday night, I made a bracelet for Sarah’s mom, Rachel.

Sarah, if you have forgotten — and how could you, I talk about her all the time — is Sophie’s BFF. I love Rachel, too, and was happy to learn from Facebook that her birthday was Tuesday (happy I saw it BEFORE her birthday). I had just enough time to make her a little present — a bracelet of vintage beads, we’d discussed our mutual love of beads several times before.

Tuesday morning, in between making lunches and brushing teeth, I wrapped the bracelet in tissue paper, put it in a little bag and found just the right tag. Phew. Done. I was pretty pleased with my handiwork, and set the bag on the kitchen table, so I wouldn’t forget to drop it by Rachel and Sarah’s house on my way to work. Rachel works at the girls’ school, but I recalled her saying she’s only there Mondays.

Ray did the actual kid delivery that day, and I was finishing getting ready in the back of the house when they left. I emerged with just enough time to grab my purse, drop the present and skid into work.

But the present was gone. I stared at the dog. He looked back, guilt-free. Pencils are more his thing. I looked in the car, in the living room, all over the kitchen. Gone.

Out of time, I got in the car and called Ray. Twice. No answer. Finally I texted. Did you see a blue bag?

Yes, the text came back. “You were nowhere to be found. Sophie said she needed it, so I put it in her backpack!”

“Get it back!” I replied. That wasn’t happening. Ray didn’t see the big deal and frankly, it really wasn’t a big deal. But I was disappointed. I don’t know Rachel well, but she seems like the kind of person who would really appreciate getting a present on her real birthday. Now the bag was gone — probably smashed at the bottom of Sophie’s backpack, never to be seen again.

I felt tears well up in my eyes. But there wasn’t much I could do, so I headed to work. Ray called.

“Why’d you do that?” I asked.

“Well,” he replied, “Sophie always knows what’s going on. I figured she knew she was suppose to take the present to school with her.”

I harrumphed, said I was in mood to talk, and got off the phone, supremely annoyed.

To be honest, a few hours later, I’d all but forgotten about the little blue bag. Then I heard a text come in. It was from Rachel.

“Thanks a bunch friend!!! Two angels brought me the gift and gave me enough hugs and kisses for a whole week. Bracelet is totally me! Best day. Thx”

Turns out, Rachel does work on Tuesdays. Sophie carefully took the present from her backpack, presented it to her teacher and told her she needed to bring it to Sarah’s mom. So she and Sarah did.

Ray was right. Sophie knew exactly what to do.


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Orthotic Art

posted Wednesday January 27th, 2010

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Depsite my best (well, ok, half-hearted) attempts to love Phoenix, sometimes it doesn’t happen. But one thing I do adore about this town is how damn small it is — and when you have kids, you discover that over and over, in unexpected ways.

Turns out, Sophie’s teacher’s brother-in-law runs the coolest record store in town.  One of her classmates showed up the first week of school with an assigned bagful of “favorite things,” including a string doll from Frances, one of my favorite boutiques. Turns out, her aunt works there. (I just discovered Maile’s mom Audrey has a wonderful blog, too.)

And it turns out (yes, I am getting to the point here!) that Sophie’s orthopedist, Rick Shindell, is married to one of the city’s best artists, Mary. As I learned during Sophie’s first appointment with him years ago, Rick is an artist as well. He made some gorgeous metal benches that graced the gallery eye lounge, last time I checked. (Hey, I don’t get out much.)

A few years ago, Dr. Shindell (it feels too odd to call him Rick) took part in a show at Made, another of my favorite boutiques, owned by my dear friend Cindy Dach (see? small town!). The show featured all kinds of planters designed by local artists. I have to admit that Dr. Shindell’s made me a little uneasy. He had taken a patient’s cast-off orthopedic device — not a fake leg or anything, just a leg brace — and turned it into a planter.

Clever, but I couldn’t look at it.

I was having trouble seeing beauty in orthotics, given the time we spent in our house in those days, strapping Sophie into them. To me, they were an ugly reminder of weakness; today, I strongly believe those braces are a big reason why Sophie finally walked at 3 and now, at 6 and a half, runs, jumps and (almost) skips.

I have to admit that lately I’ve been neglectful when it comes to making Sophie wear any sort of brace. The other day, I watched Sophie’s ballet class, and noticed that, as her physical therapist has gently observed, her feet still cave in more than a little. She needs new inserts for her shoes; I’ve got to move that up on the “to do” list.

But even without them, she’s super. I’m grateful to both Dr. Shindell and Docras, the PT.

A funny thing happened over the weekend. I was cleaning out Sophie’s closet, and came upon three pairs of outgrown orthotics. Why was I saving them? They seem an odd thing to keep, and yet, an odd thing to toss — after all, she spent years in them, literally. Those braces became a part of her. But Dorcas had mentioned she knows a PT who refurbishes old braces (they cost thousands new and custom-fit) and takes them to kids in Mexico. I put them in a bag to give to her, but before that, I photographed them all for posterity.

And you know what? In their own way, those old braces looked sort of beautiful. Still, I didn’t keep any around to use as planters.

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Party Hat

Carousel

posted Tuesday January 26th, 2010

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We went to the zoo Sunday afternoon, along with most of greater Phoenix. It was the perfect day — sunny but chilly enough that nothing smelled bad.

You might make the giraffes your first stop at the zoo, or the zebras or the squirrel monkeys, but not our family — we hit the carousel. The girls broke into a run when they saw it, and yeah, looking back, I guess Sophie was a bit of a sight, racing along like a wind-up toy, arms flailing, probably squealing. I wasn’t really paying attention to how different she looked. Not til a woman in a purple sweater sitting on a bench in front of the carousel purposefully caught my eye as we passed.

“She’s precious!” the woman said loudly. I smiled and nodded in agreement, thanking her as I rushed to keep up with Sophie.

And then, almost like it was a warning — or a threat – this woman bellowed out, “SHE’S SPECIAL!”

I didn’t acknowledge that. But while I wanted to shake the oddness of the encounter, I couldn’t.

Ray manned the camera while Annabelle, Sophie and I boarded the carousel. Annabelle grabbed an animal and climbed on alone. Sophie considered that then chose the bench, as she often does.

When we got off the carousel, the woman in the purple sweater was gone.

An hour later, we’d eaten lunch and played in a treehouse and still hadn’t seen an animal. Sophie asked for another carousel ride, and as we approached the line, I saw the woman in the purple sweater. She was with another woman (young enough to be her daugther, I suppose) in a turquoise sweatshirt and a white turtleneck, her hair cut short — her features unmistakable.  They disappeared into the gift shop.

This time, Sophie got brave. She let me balance her on a jackrabbit, though she begged me to hold onto her the whole time. I did. I couldn’t help it — I craned my neck as the carousel swooped around, looking for those women. I didn’t see them again.

After that ride, we gathered Annabelle and Ray and hit the trail to finally see a few animals. By now Sophie was tired — and stubborn. I bribed her to move along with the promise of one last carousel ride. I promised myself that I wouldn’t look for the woman in the purple sweater.

This time, Sophie chose to ride a black dog, and she didn’t let me hold on. She was so proud of herself – clutching the brass pole with her tiny hands, moving to the corny music. We both cracked up the whole time.

Some days feel like a merry-go-round — like the movie Groundhog Day, like an endless cycle of laundry and dishes and making school lunches and therapy sessions and odd reminders of what is and what’s to come.

It’s important to grab a carousel ride in the sun when you have the chance.


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Tattoo This on Your Heart

posted Monday January 25th, 2010

A few weeks ago, I mentioned that fact that my dear friend Trish took her 16-year-old son Zach to Tucson to get a tattoo. She has written an absolutely stunning piece about it for New Times. Read it. You’ll be glad you did.


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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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