“Where’s Sophie?”

I’d been wondering if anyone would ask. It was almost halfway through the Saturday night performance of the Snow Queen, and the sprites — already covered in green glitter, hair teased in ponytails all over their little heads – were putting on their unitards and wings, getting ready for their scene.

Sophie’s chair was empty, her costume untouched.

This had all been decided way ahead of time. When they cast Sophie as a sprite, the show’s directors announced that while the other kids would perform in two shows a day (a matinee and an evening performance) Sophie would just perform at the matinees. “She’ll get too tired otherwise,” I was told.

To be honest, I wasa little bummed, knowing that Annabelle not only would perform in all the shows but in two different roles (a rosebud and a snowflake!), quite a coup. But I kept my mouth shut. This was a big deal for the directors as well as for Sophie. There are enough balls to be kept in the air at this production without my adorable little wild card thrown in the mix.

We decided Ray would take Sophie to Chuck E. Cheese Saturday evening, and go home with her best friend Sunday.

Watching Sophie fall asleep at the table when we got a snack after that first matinee show, I realized the director had been right. She was tired. And the distractions worked beautifully. Ray hustled her off to see Chuck E. and I brought Annabelle back to the theater for the evening performance, where I’d volunteered to work backstage. All good.

But no one thought to explain to the other kids why Sophie wouldn’t be there Saturday night.

“Where’s Sophie?” one sprite asked, then the others started asking. “Where’s Sophie? Where’s Sophie? Why isn’t Sophie here?”

My favorite little sprite (aside from Sophie, of course), a tiny blonde named Gillian, chimed in, sounding alarmed: “Sophie just has to be here!”

I looked at the backstage manager, who’d come over to see what all the noise was about. ”They want to know where Sophie is,” I told him.  He just looked at me.

“Well,” I said, turning to the kids. “That’s a good question.”

Pause.

“She’s just not here!” I said finally, with a big smile. “She couldn’t make it. But she’ll be here tomorrow!”

As it does with 7-year-olds, the subject changed quickly. But I kept thinking about it. And the more I thought about it, the happier I was. These little girls loved Sophie! They wanted her, missed her. They didn’t see her differences, or if they did, they didn’t mind them. I hadn’t seen any of them interact with her much during rehearsals; I worried the whole time that she was just in their way — sitting too close, asking too many questions, hard to understand.

Apparently, that wasn’t the case.

Better to leave everyone wanting a little more, I figure, than to overstay our welcome. The backstage manager smiled at me. “She’ll be in all four shows next year,” he promised.

Maybe she will. She’ll certainly audition, as long as she wants to, and after this weekend I can’t imagine she won’t. Sophie had a blast. And she did so well! She waved a couple times when she wasn’t supposed to, and fidgeted with her costume a bit, but other than that she knew all her steps and executed them well.

For me, she stole the show — from everyone but my sweet Annabelle. What can I say? It was a stage mom’s dream weekend.

My only real regret is that they videotape the show once a weekend — on Saturday night. So all we’ve got are backstage pictures, and some really great memories.

It was a good one. If I was one to nitpick, I’d say that there was not enough candy in the pinata, the music guys flopped (7 and 9 year olds are too old for “Five Little Monkeys”), the coffee was bad, and what was I thinking, skipping the adult beverages?!

Minutes before guests were set to arrive, as I was scurrying around ripping off wrappers and shoving flowers into jars, Annabelle eyed the pile of pink bakery boxes on the table and informed me in no uncertain terms that I should have made the cupcakes myself.

But otherwise, it was good. Sophie was happy. At one point, my friend Mrs. M. looked around and announced she’d never seen so many kids at a birthday party. It’s true. Sophie’s pretty popular. (Plus I invited a crapload of kids.) She was surrounded by friends as she whacked the pinata, got her face painted and ran around (and around and around) the house.

A couple of the girls from her class hugged her when the sparkler on her chocolate cupcake scared her a little as we all sang Happy Birthday.

It was a good day. But not a transcendent one. I didn’t get teary or philosophical. I simply threw a birthday party.

That’s more than okay.

The other day, Ray was talking about how cute and smart Sophie is and he stopped and sighed and announced, “Yeah, these are Sophie’s salad years.”

He’s right. By the time puberty hits — heck, maybe even by the time third grade hits — things will change for our “different” child. You know the drill. But for now, damnit, I’m going to enjoy it.

That said, I think that was the last free-for-all party. None of the real mayhem was captured on film, so you’ll have to take my word for it: There was mayhem. Toward the end, during the opening of an insane amount of presents, Ms. X (pictured below with the birthday girl) caught my eye, nodded wisely and said, “Maybe this should be the last one like this.”

I agree completely. At least, today I do. Remind me in 45 or weeks, or so, when I’m in the thick of party planning.

Here are a few pictures.

You know, I thought to myself as I cracked open the first Diet Coke of the morning and washed down a Claritin-D and a multi-vitamin, it’s really really easy to write bad poetry and really really hard to write good poetry.

That is not my point here. My point is this. No one told me when I was almost 7 that there was no way I was going to end up as a poet, no matter how hard I tried. No one set any such limitations — not my parents, my teachers or society.

When you are almost 7, the possibilities are pretty endless.

Enter Sophie. She’s almost 7. It’s been a while since she’s talked about what she wants to be when she grows up, but suddenly, it’s back as a topic of conversation.

Mostly, Sophie wants to be a veterniarian. But the other day she announced, “I be a mother when I grow up!”

That, for obvious reasons, is the biggest heartbreaker of all for me, although I do maintain that I’ll do everything in my power (well, you know what I mean) to make sure that at the very least, Sophie falls in love and has great sex.

The girls had just settled into their booster seats in the car this morning, when — probably motivated by the strong desire to own the large rainbow pack of dry-erase markers we were bringing to Ms. Y — Sophie asked, “Can I be a teacher when I grow up?”

“Of course!” replied Annabelle, whose own list currently includes fashion designer, ballerina, actress, writer and scientist. “You can be anything you want to be, Sophie!”

I didn’t say a word.

But it did occur to me, as I backed out of the driveway and we headed off into the day, that Sophie is already quite a teacher.

It’s such a detailed process, designed to address every possible angle of your kid and her needs, but really what I find is that it lulls you (or me, anyway) into a false sense of security.

Consider the following.

The meeting was Friday. Monday (ok, it might have been Tuesday) evening we were winding down, discussing the day’s highlights, and Sophie informed me that she had eaten some M&Ms.

“Yum yum!” she announced, pantomiming the act of the gobble. I was curious.

“Where’d you get those?”

She mentioned the name of the special ed teacher at school. Upon further discussion, it became clear that Sophie had behaved well during a session, and was rewarded with what I’m guessing was one or two M&Ms.

Really, no big deal. Except that we spent a long time in that IEP meeting just days before talking about various reward systems — that the Elmo chart (which became a Christmas chart, then a Foofa from Yo Gabba Gabba chart) had fallen by the wayside, that sometimes it worked to hold onto Sophie’s favorite self-soothing paintbrush during a session and give it to her at the end in honor of a job well done.

No one mentioned M&Ms. I’m sure that’s because there are all sorts of food rules at school these days. I’m all in favor of that. If I’m going to let my kid have junk food, I want to be in control of it. That said, I really don’t care about occasional treats. (This is a whole other discussion for another day, but I think it’s a bad idea to never let your kid have treats; it only makes her obsessed with getting them. I should know.)

But not as a reward for good behavior. Not from the special ed teacher, who of all people has been trained (I thought) to come up with better methods to ensure good behavior.

And not, for crying out loud, for a kid with Down syndrome. Sophie’s pretty lithe at the moment, but I’d like to keep it that way, and sadly, she’s genetically programmed for plumpness.

Most of all, I was annoyed at the timing — that Sophie mentioned the M&M thing just days after the IEP meeting. A good reminder, I suppose, that an IEP is pretty much worth the paper it’s printed on.

I do love Sophie’s teacher, Ms. Y; she  has quite a way with words. When I mentioned the M&M thing in an email, she responded that “non-culinary” reward options would immediately be explored.

In fact, the special ed teacher reported yesterday, that will be written into the IEP.

Great.

As I commented to Joyce, reading this made my day/week/year! Try to read it without going a little waterworks yourself.

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.   

Yesterday morning was pretty typical — we scurried to get ready, scurried out the door, scurried out of the car into backpacks and lunch boxes and over the crosswalk to school.

When Sophie, Annabelle and I arrived, it was the typical rush of teachers opening doors in the carpool lane (it always reminds me so much of a valet service) and kids flowing onto the playground.

We all stopped to say hello to Annabelle’s teacher, who gave us her usual big, happy greeting. Sophie said to her, “I come to your classroom!”

At first I didn’t give that much thought, standing there, because Sophie’s been saying that since the first day of school and we’ve always laughed about it. She doesn’t have easy access to Annabelle’s classroom. It’s on another floor, a gigantic (for Sophie) staircase away.

But something compelled me to look up from Sophie’s face to the teacher’s.

“Um, Sophie hasn’t actually shown up in your classroom, has she?”

“Why, yes!” the teacher responded cheerily. “Just yesterday!”

The craze of arriving kids continued through this discussion, so I couldn’t get much out of her, except that Sophie had shown up and a friend of Annabelle’s had escorted her back down the stairs to class.

When the bell rang, and Miss Y appeared to usher in her line, I broke the Cardinal rule. I brought up a Big Subject in the before-school rush.

“Hey, did you hear that Sophie showed up in Annabelle’s teacher’s room yesterday?” I asked, trying to sound casual.

“Noooooooooo,” she replied, clearly replaying the past day in her head even as she grabbed for hands and secured packs on backs.

She stopped and looked at me.

“Really?”

By day’s end, when we corresponded on email, she had asked for but not received details of the journey. There was speculation that this might have taken place during a therapy session or maybe music, since Miss Y never knew it happened.

I suppose it was a good week for this. In a couple hours, I’ll drive over to school for that one-month meeting of Sophie’s IEP team, which is finally to take place. And I’ll bring this up.

But first I’m going to let them all go around the room and talk about how incredibly well Sophie is doing, how this is the best possible setting for her, how her academics and socialization are through the roof (even if they really aren’t — I notice how eager people are to tell me how well Sophie is doing, and how eager I am to accept that news; events like yesterday’s are a wake-up call from the complacency that sets in) and when they’re done, I’ll pipe up.

And maybe, just maybe, if she’s at this meeting, the principal won’t turn to me, wince, and say what she said last year at this meeting, when I asked if we could write a provision into her IEP to have someone walk Sophie from the cafeteria to the playground at lunch each day.

You  know, if Sophie needs to be treated like someone other than a typical kid, the principal said, you will need to look at options elsewhere in the district.

Maybe there’s a simple explanation for the wandering. It’s true, Sophie was fine — people know and love her at this school, they want to take care of her. I just wish that when I’d asked Miss Y about it, she’d had a ready explanation. I know she does, too. She takes this as seriously as I do.

Honestly, the seriousness of it didn’t really sink in til I called my mom last night, to recount the events of the day, and mentioned it almost as an aside. She was horrified, speechless (rare for her). We hung up and 20 minutes later, I was in Safeway, and the phone rang again. What can we do about this? she asked.

I honestly don’t know. I’m back to thinking Sophie needs a micro chip or a tattoo or at least a tag that says, “If lost, please return to:”

Or maybe I’m just exhausted.

Here’s how it went down Wednesday night. You’ll have to forgive me, some details may be a bit askew, but this is basically what happened.

“Hey girls, come into the living room and sit down for a minute,” I said.

Annabelle looked at me suspiciously.

“Is this about Rosy?”

“It is, sweetie.”

She squeezed out a few tears before I could say anything. I explained that Rosy was very, very old, and didn’t feel well anymore. The next day, I was going to take Rosy to the vet and the doctor would give her a shot. The shot wouldn’t hurt, but it would put Rosy to sleep. And she wouldn’t wake up.

More tears from Annabelle. And from me.

Sophie, who hadn’t seemed to be paying attention, stood up and said, “Rosy go to sleep! Cock a doodle doo! The rooster! She wake up! She be all better now!”

I took her on my lap. “No, Sophie,” I said, trying to be a little firm. “Rosy is not going to wake up.”

But she didn’t get it. I decided that was okay. I explained to both girls that Ray and I wanted them to know what was going to happen so they could say their extra-special good byes to Rosy. I tried to explain to Annabelle that dogs can’t make their own decisions — that we have to do what we think is best for them. That it’s our responsibility. And that we didn’t want Rosy to have one bad day.

We pretty much went about the business of the evening after that. I put out some frozen hamburger to thaw for a Last Supper the next morning.

Just before bed, Annabelle approached me in the kitchen and told me she was going to make Rosy a paper flower (see above). And then she told me something else.

“You know what, Mommy? I’m not going to be sad about Rosy dying because she’s had a good long life.”

I smiled and hugged Annabelle, feeling melancholy. I worry that Annabelle has been through too much already, at 8 — a sister with a disability and a heart condition; a beloved grandmother dying far too young. A couple months ago, Annabelle was the one who found Izzy, the ancient Cornish Rex cat, curled up asleep — dead. Even that she handled with grace I find hard to muster at 42.

Annabelle’s got an old soul. Has  her life aged it prematurely? Or would she always have been this way?

Sophie I don’t worry about, not like that. Her soul is so young. She woke up this morning and asked where Rosy was, and while I think she knew what I’d say, I don’t think she had any idea what that meant. Sophie is barreling through life and at times my greatest wish for her, as I’ve written so many times, is that she doesn’t grasp the situation at hand.

Like the other day before school. She spied two girls from her kindergarten class, literally walking arm in arm. One I don’t honestly expect much from. She’s an okay kid, but never has paid much attention to Sophie. The other has been a dear friend to Sophie, seeking her out and taking her hand when it’s time to walk to class, helping her with classroom tasks.

But this particular morning she was with her pal, and when Sophie approached and got right in their faces, singing a song they didn’t recognize, the sweet girl looked exasperated.

“Sophie, why are you doing that?” she asked, then the two turned and walked off, with all the panache of Lindsay Lohan. I winced. I couldn’t blame them — they’re 6, and Sophie was being annoying.

Still, it smarted. (Funny, that word — smarted. Don’tcha think?) Sophie lacks the wherewithall (at this point, anyway) to recognize such a slight. And she lacks the social graces to approach friends the right way. Somewhere in the middle of the two, though, I fear as always that she knows exactly what’s going on, but doesn’t know how to fix it.

I don’t know how to fix it, either. That day, I distracted her til she spotted another friend who was willing to hang with her.

I worry that even if she doesn’t quite grasp them, situations like that will leave an indelible mark on Sophie’s young, impressionable soul.

And I worry that Annabelle’s soul is already starting to harden — just a little.

Mostly, I just worry. They are both my sweet, sweet girls. And unlike my sweet girl Rosy, sometimes there will be nothing I can do to keep them from having a bad day.

Signs of what, I don’t know. Maybe by definition, that means they’re not signs at all. You tell me. I will recall the latest — including my reaction, for the purposes of being completely honest.

Probably it’s just the latest sign that I’m an asshole.

The second or third night of our beach vacation, a few of us loitered on the walk back from dinner to the hotel. Annabelle had gone to Sea World with my sister and her family; my parents were already on the couch. My dear friend Trish and her son Zach, who is 16, were in town and we’d eaten together. Trish had Sophie on her hip as we headed back.

Funny, I hadn’t noticed how much shabbier than chic the little strip of retail on La Jolla’s north shore has become over the years we’ve been staying there — the ancient surf shops, the coffee joint that changes owners every two or three years, the grungy market. I love it all, even the tiny nail salon too dirty looking to dream of stepping foot in. Except it was gone this year, replaced by a gleaming, colorful, weigh-your-own frozen yogurt shop — the kind that are popping up all over Phoenix. Sophie’s favorite.

We stopped for chocolate with no toppings for her and a little something for everyone else, ate it there, and started back to the room in the dark. The sidewalk is narrow a block from the beach, sandy and slippery and people scoot around a party as slow as ours. We didn’t notice; Sophie was loudly singing her ABCs — doing a fine job, I thought, til a middle-aged woman passed us and called out, “Hey, she missed the H!” I responded, “At least it wasn’t the P!” (Sorry, old joke.)

Really, a trivial moment if ever there was one.

Immediately after, from the pitch black, a figure emerged. At first, all I could see was that the person was rather big, wearing all white — white shirt, white shorts, white shoes — and bounding toward us. Galloping, sort of. It was a girl, I could finally tell, with a dark brown pageboy and, I realized, features not unlike Sophie’s. 

We stopped to let the girl pass us; she was gone as quickly as she’d appeared.

If I’d been with anyone else, I’m not sure I would have said a word. But it was Trish. We have a lot of history – most recently, two months ago, at the girls’ dance recital, when right before the show was to begin, we had an encounter with another person with Down syndrome.  

I don’t think Zach and Sophie noticed a thing. But Trish and I stood there, staring first after the girl, then at each other. And we did the mature thing. We burst out laughing. To be fair, Trish had had two beers and I’d had some kind of vodka lemonade thing, but still. One of us even wet her pants, but I’m not saying who.

Zach demanded an explanation as to why we were laughing. Trish tried. She said it was the look on my face when the girl ran by. But there was no way to explain it. Definitely not to a 16-year-old boy, who looked increasingly disgusted with us.

And perhaps not to you, either. Or maybe you get it. I still can’t explain why I laughed, except to say I was uncomfortable, and also saying to Trish, “SEE? SEE? IT KEEPS HAPPENING.” 

Was the figure in white another ghost of my future? Or am I looking for signs where there are only young girls, chasing after their own families — or maybe even their dreams.

Or maybe she was just on her way to get some frozen yogurt.

I had to stop reading the squid stories. It’s gone from bad to worse — by yesterday the New York Times was reporting that jumbo, flying, carnivorous squid are pulling masks and oxygen tanks off divers up and down the San Diego coast.

We were safely back in Phoenix by then, and upon reflection, I must tell you that really, squid were not the scariest thing on the beach last week.

I’m far more frightened of a typical six-year-old.

It’s not like I don’t walk amongst them on a regular basis, but seldom do I find myself in very close quarters with one for an extended period of time. That happened last week, when we vacationed with my parents and my sister Jenny and her family — including Ben, 8, Sam, 2 and Kate — 6.

My niece Kate is just about 6 weeks older than Sophie. My first memory of her is burned into my psyche — Jenny walking into my hospital room, carrying Kate in her bucket seat. She caught the first plane to Denver after I called to tell her about Sophie, hauling her own newborn.

(Jenny’s a way better sister than I am — a way braver one, at least. No way would I have taken my newborn into a dirty, smelly hospital. To be fair, Jenny is a hospital social worker, so she’s not freaked out by all things medical the way I am. Still. She’s one hell of a sister and friend.)

Kate and Sophie grew, one faster than the other. I know there are differences between Sophie and her peers, but it’s one of those smoke and mirror things — until I’m confronted with some quality time with Kate, I can sort of make those differences go away. Diminish a little. But Kate is so strong, so smart, so on.

And so close to her cousin Annabelle.

Only once or twice during the week together did I feel compelled to pull Annabelle and Kate aside and ask them to include Sophie. It wasn’t like that, not really. It was like they were in a different orbit. Sophie didn’t seem to care at all when the other girls took a walk up the beach (don’t worry, within eyeshot!) by themselves, or ran up to the room together to pee. Or did a complicated craft, or told silly stories, or — you get the idea.

Sophie was perfectly happy in the company of adults, or Baby Sam, as we all call him, who soon won’t be much of a baby anymore. (She, of course, had to be watched like a hawk. She’ll still run off if she can, and needed a lot of coaxing up and down stairs.) I didn’t really even think much of it til we were back home, and my girls were back to their ways.

We walked in the house, and the two of them went straight to Annabelle’s room, where they played together for a good 20 minutes. (A miracle!) Last night, Annabelle painted Sophie’s nails. This morning, she gently chastized her for chewing the polish off. They bicker, but they cuddle. They are friends. Sometimes.

At one point during the beach week, I did say to Annabelle, “I’m glad you’re having so much fun with Kate! Hard to believe she’s the same age as Sophie, isn’t it?”

Annabelle looked up at me. “Kate has her Kate Things, just like Sophie has her Sophie Things,” she said, more wisely than I could ever dream of putting it.

Still, it makes me melancholy for what isn’t. That said, Jenny and I barely spoke a civil word to one another til we were both pregnant for the first time. So there’s some perspective for you — and for me.

And maybe by next year’s beach trip, Sophie will have caught up to the other girls, at least a bit.

If not, that’s okay, too. It’ll have to be.