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Party Hat

This morning, I put Sophie on at the bus for her last ride. She handed thank you gifts to the driver Dorothy and Tina, the aide (two adults to shuttle one little girl on a very long — suprisingly, no, not a short — bus) and I wished Dorothy well. She’s retiring. She looked at me and smiled and said, “I have a feeling that kindergarten’s going to be a lot harder for you than it is for Sophie.”

She read my mind. That’s not hard these days, since I can feel my thoughts sticking out of my ears.

I have to remind myself that I felt the same way the first day I dropped Sophie off at day care, the first day she moved to the pre-school room, the first time I put her on the bus. It doesn’t help that I’ve developed an attachment bordering on co-dependence with Janice, Sophie’s pre-school teacher.

This morning I emailed Janice to thank her once last time, and told her she’s The Sophie Whisperer. Sophie’s had a lot of amazing caregivers, therapists and teachers already in her young life, but Janice has the vibe. She’s Buddah, calm in a storm of 4 and 5 year olds, some of them with pretty profound special needs (remind me to come up with a better term than “special needs,” some day) and like a dog with high-pitched noises, Sophie’s good at picking up on frayed nerves and reacting stubbornly. Very stubbornly.

Last year, in a random conversation, I asked Janice, “So, how do you react when Sophie yells `YOU’RE MEAN’ in your face, or at strangers?” (Something Sophie’d developed as a regular — and most annoying — habit, I’d seen her do it with me, with Ray, with her grandparents, babysitters, sister, the dog, the cats….) Janice looked confused. “We’ve never heard her say that,” she said. Of course not. Sophie wouldn’t dare. And it’s not because there are threats, not even as much as a “time out,” that I know of. Janice simply has the touch.

So does Ms. X, who I hope will be her kindergarten teacher. (More on Ms. X later.) But after two years, I’m having trouble letting Janice go. Sophie will, too, when she figures out that today was her last with her beloved “Morning Monkeys”. We’ll be mourning monkeys all summer, trust me.

In my email, I apologized to Janice for the tear jerker. As I’ve told this woman, I’ve cried in front of her more in the past few months than I have — perhaps ever — in front of my mom. She emailed back to say yeah, she was sad. She’d just said her good byes at the bus.

She wrote, “I just sent Sophie on her way in the world.”


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Party Hat

"If that's her, that's her."

posted Wednesday May 21st, 2008

Last night, after Sophie had gone to bed, Annabelle and I settled down on the couch. As the older sister, she gets to stay up a little later.

“Sophie’s turning 5 tomorrow,” Annabelle said.

“Yes.”

“Is she really going to kindergarten? She doesn’t talk very well.”

“You know why that is, right?”

“No.”

(I think she does, but who knows. I’ve been known to play dumb a time or two, myself, in this life.)

“Well, Sophie has Down syndrome. That makes her a little different from us, from other kids her age.”

“Yeah.”

Luckily, Ray had just come in from a bike ride. He was summoned to the couch, where he explained that every person starts with one cell, and that in Sophie’s case, that cell was different (we’ll have to come up with a different word, whoops, for different; he also learned that the phrase “genetic material” doesn’t work on an almost 7 year old) and therefore, every bit of Sophie’s just a little bit different. (Sometimes more than a little bit.)

“Does that make you sad, that she’s different?” I asked.

“No,” Annabelle replied, matter of factly. “If that’s her, that’s her.”


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Party Hat

Chocolate Dance Party

posted Wednesday May 21st, 2008

Sophie, girl in a party hat.

Sophie is 5 today.

She knows exactly what she wants for her fifth birthday: chocolate ice cream.

Plain chocolate ice cream, not the kind with candy or other stuff in it. Which is why I’m worried, because the only chocolate ice cream I could find in single-serving containers is the Ben & Jerry’s kind with chunks of fudge brownies in it. I hope she doesn’t notice, but there isn’t much chance of that.

Ray – my husband, Sophie’s father – is also a purist. He only likes plain chocolate ice cream. As far as I know, this is not something he and Sophie have ever discussed. It must be genetic. Personally, I like chunks. Our older daughter Annabelle, who will celebrate her seventh birthday in July, likes chunks – sometimes. For a while she liked only vanilla ice cream, then it was raspberry gelato, then she even tried (and liked) my frozen yogurt. She likes sprinkles. Ray does, too, but only chocolate jimmies.

We live in Arizona. It’s hot. It’s all about the frozen treat. In fact, I ate a Weight Watchers fudgsicle while waiting for my computer to load so I could write this.

I remember thinking 3 was a big deal, but really, it’s all about 5. And kindergarten. I’ve pretty much been thinking about kindergarten since Sophie was born.

That’s what you’re supposed to do when your kid has Down syndrome.

At least, I think it is. Sophie was the first person I’d ever met who had Down syndrome, and in the past five years, while I have encountered several people with it, she’s the only one I’ve gotten to know. I do keep swearing to myself that I’ll start volunteering at the ARC day program down the street.

But so far, the closest I’ve come is that I now secretly watch Megan and Paco, the baggers at our Safeway who have Down syndrome. I like to imagine that when she grows up, Sophie will be a little like Megan, with long silky light brown hair to the middle of her back and sweet chubby cheeks, although I do not want Sophie’s career choices to be limited to stuffing bananas and cans of Chef Boyardee into plastic sacks.

Sometimes I stare at Megan. I think she knows. One day I caught her eye and said, “Thank you very much, Megan! Have a great day!” and she looked at me like I was retarded and said, “You too,” with as much casual panache as any self-respecting teenager.

I don’t usually let myself imagine Sophie as a teenager. I’m all about kindergarten. That’s as far as I can get. The other night at dinner I burst into tears and as I snuffled into my sangria Ray (who first looked annoyed, then concerned, then annoyed again when I said, “I’m just so worried about kindergarten!”) said, “Well, I worry about what will happen when Sophie is 40 and she has to move in with Annabelle.”

That shut off the tears and shut me down. I’m not going there. I’ve got to make sure Sophie makes it through kindergarten (heck, her first day) alive. And I am worried about Annabelle, very worried, because Sophie will be moving in with her, in a way at least, into her world at the sweet little public elementary school down the street. The school’s diverse in terms of income. And there are a few Spanish speakers. But just one other kid with Down syndrome. Right now, Annabelle and her friends are thrilled that Sophie is coming to their school. We’ll see what happens.

Sophie and Annabelle, out for ice cream.

That’s not for months. We haven’t even closed this school year out. Today I’ll celebrate the next-to-the-last day of Sophie’s pre-school experience with single-serving Ben & Jerry’s ice cream (in assorted flavors, but no plain chocolate) and “Sophie’s Chocolate Dance Party,” the CD mix I made for her birthday.

You know, I’ve discovered the key to happiness. It’s not having a child with Down syndrome. It’s not even that complicated. I’m pissed, because I was contemplating writing a “This I Believe” essay for NPR about how I finally believe in happiness, but who knew “happiness” would become a freaking trend? Now it’s a whole genre in the bookstore.

So I’ll just tell you: The secret to happiness is a dance party in your kitchen. My whole life, I’ve lost myself in the movies, all kinds of movies, but mostly, I admit, cheesy chick flicks. The kind where – always – about a third of the way in – the main characters drink a little too much wine and wind up dancing around the kitchen. (If you have no idea what I’m talking about, see “Practical Magic,” a truly horrible Nicole Kidman/Sandra Bullock stinker with a super kitchen dance scene featuring the song “Coconut,” as in, “put the lime in the coconut and drink it all down”. I told you, bad.)

A while ago, bored on a weekend afternoon, I turned on the 70s music channel on the digital cable TV, and invited my girls to a dance party. We congaed around the dining room table, spun around the kitchen and always – because Sophie’s obsessed with butts – shook our booties. That’s my drug. Forget the wine, just give me an armload of either girl (or both at once) and some Boogie Wonderland, and I’m truly happy, at least in the moment. And that’s no small miracle.

I’ve always thought (even before I had kids) that we’ve got birthdays all wrong. Why celebrate the person who was born? What choice did he or she have? The parents deserve the gifts. Until this catches on, I’ll give myself presents on my kids’ birthdays. For Sophie’s 5th, I bought myself a little hand-colored print of a girl in a party hat on etsy.com, from an artist in Portland, Oregon whose work I first saw years ago at an arts fair in Scottsdale. (The artist’s name is Amanda Blake; her web site is http://www.amandablakeart.com or you can stick her name in the search engine on etsy.com and her stuff will pop up.)

\

And — fighting myself every step of the way, since I’m as low-tech as they come, and I’ve never journaled, and, anyhow, “professional” (whatever that means) writers aren’t supposed to give it away for free — I signed up for this blog.

If you’re reading this, it means I got the first post up.


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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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