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Party Hat

Megan

posted Thursday November 11th, 2010

I’ve been thinking about Megan a lot, lately.

I don’t know much about her — only that she has Down syndrome, and she went to our elementary school for a while several years ago. I’m not even sure I’ve ever seen her, although for some reason I have a clear picture in my mind of an awkward little girl with disheveled dishwater blonde hair and round glasses, her head cocked to the side.

But Megan’s a real kid for sure, a couple years older than Annabelle, maybe even in junior high by now. She started in kindergarten at our school, just like Sophie did. And by third grade she was gone — off to the school that houses our district’s program for the mentally impaired.

That’s what happens in third grade. Those cute little kids with Down syndrome who were mainstreamed from the beginning — pinned with grand hopes of inclusion — fall behind academically, and it’s time for them to go.

Megan went.

I’m told Megan and Sophie don’t have much in common beyond dishwater blonde hair and Down syndrome, that Sophie’s “higher functioning” than the older girl, but still I can see the writing on the wall, or rather, the not-improving handwriting on Sophie’s incomplete assignment sheets, and I can bet what certain people at our school (even well-meaning people, people who love Sophie) have in mind for my little girl.

The MR room.

And that might be okay, it might be best for Sophie, it might even be that that particular program has improved dramatically since I took a tour and ran screaming from it when Sophie was 4 and we were considering elementary school options.

But I’m not sure. And to be honest, I’m also not sure that my feelings about this whole thing aren’t more emotional than practical — more social than academic. A couple weeks ago, we attended our school’s fall festival. Both my girls had fun, but Sophie truly had a blast. She hung out with her best friend Sarah, which was cool; but even better, everywhere we went, everyone knew Sophie. She knew them. And not just to give stereotypical DS hugs. This is Sophie’s world. She travels it effortlessly (I don’t kid myself that some days are harder than others, but still) and she thrives in it.

I feel so guilty. I feel guilty because in some ways, I worry I’ve set her — set us — up for failure and disappointment. I knew academics would get tougher, I know the school is unprepared, in so many ways, to keep Sophie, and yet I got attached. I got Sophie attached.

Now what?

The other night, when Annabelle was finding every excuse in the book to avoid her homework, I told her, “You put the `pro’ in procrastination.” I should know – too bad procrastinating’s not an Olympic sport. I’d win. But this time, for once, I’m not wasting time.

That special ed lawyer I mentioned last week? She came to the house this morning, to meet us, review Sophie’s IEP and talk about options. Things aren’t so bad, she told me, after our chat.  I know, I replied. But I need to be ready for third grade. Sophie needs to be ready.

I owe it to Sophie to figure out the very best place for her, and to get her all the resources she deserves. And if that means showing up at the next school meeting with an attorney (albeit a gentle-seeming one) I’ll do it. I’ve looked for years for just the right advocate; today I think I found her. (And if you live in metro Phoenix and you want her contact information, email me and I’ll be happy to give it to you.)  

This woman spent two hours with us. She reviewed Sophie’s goals, her test scores, her drawings, talked to Sophie — even submitted to a spelling test by Sophie — and asked her good questions. Asked me good questions, too. She talked about the resources Sophie will need to do well in third grade; she doesn’t think it’s so much, or too much to ask for. It’s true, Sophie’s reading at grade level. Her test scores aren’t bad. The lawyer left me with a managable “to do” list.

She was impressed with Sophie, even though when she asked her what she want sto be when she grows up, Sophie told her she wants to be a whoopie cushion. (What happened to wanting to be a phlebotomist? I asked in dismay. Sophie just smiled.)

At the end of the fall festival, we drove Sophie’s friend home. “I love you, Sophie!” Sarah called as she ran from the car to her house, saying it so naturally, so sincerely.

“I LOVE YOU BFF!!!!!” Sophie screamed back, full of more emotion than I thought any creature could hold.

I don’t know if Megan had a BFF at our school, or if she has one now. My mom told me the other day — always trying to make me feel better — “Remember, Sophie makes friends easily. No matter where she winds up, she’ll be okay.”

I know she’ll be okay. But I also know we all want her to be more than okay. I’m just not sure how to make that happen. At least we have a little time to try to figure it out.


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Party Hat

Growing Pains

posted Thursday November 4th, 2010

About 40 minutes into Sophie’s hour-long ballet class this past Monday, the classroom door opened and I heard the teacher’s voice.

“Amy!” she called loudly, her voice carrying over the heads of a dozen or so parents standing in the narrow hallway. “Sophie’s done for today.”

I jumped up from my seat. Sophie stood in the hall in her navy blue leotard, looking a little sheepish. She’d managed to escape the classroom — again.

“I told Sophie that if she can’t act like the other kids, she can’t be in class,” the teacher said (still loudly) as she turned to walk back into the classroom.

The words hung in the air, and before they’d disappeared, I caught the looks on the faces of two of my favorite fellow moms.

I fought the tears stinging my eyes as Sophie came running and jumped into my arms.

“Can I have my Olivia toy now?!” she asked.

I opened my mouth to say, “No, of course not. You didn’t do what you promised.”

We’d cut a deal on the way to ballet. Both Annabelle and Sophie have class at 4, and school ends across town at 3:30, so every week it’s a mad dash to get off the school grounds, into the car, over to the studio, into leotards and to class.

This is not a big deal for Annabelle, a veteran. She eats her snack in the car, knows to run straight to the dressing room when we arrive at the studio. When I noticed there was a class for Sophie’s age at the same time this fall, I figured I’d sign her up, too. She’s taken Saturday classes for a few years now; why not Mondays?

I can tell you why not. The school day is long, and Sophie gets tired. She doesn’t like to be rushed. Trying to convince her to go to the bathroom before class is like trying to get a Democrat elected in 2010. But this week, I thought I had the asnwer: an Olivia the Pig play set I found on eBay and was saving for Hanukkah. I told Sophie that if she went to the bathroom, put her leotard on without a fuss and stayed in the classroom for the whole hour, she could have a special Olivia toy when we got home.

It was going so well, til the classroom door opened. And here’s the thing. I was mad at the teacher for what she said (and the way she said it) but I was — I am — even madder at myself. I’m the one who’s agreed each week with the teacher that Sophie shouldn’t be allowed to escape, that Sophie, in effect, should act like the other kids.

And maybe we were right. Maybe Sophie is perfectly capable of behaving, and she’s just shining us on for grins.

But maybe not. And if not, shame on me. There was something about the way the teacher said it, said that Sophie has to act like the other kids, that made something in me go Ping! and the lightbulb go off. Sophie’s not like the other kids. She never will be. And I’ve got to figure out how to deal with that, in matters both large and small.

“Can I have my Olivia toy now?!” Sophie asked.

“Yes,” I said, hugging her, hiding my tears in her hair. “As soon as we get home.”

She squeezed me tight around the neck, then climbed down and found a book of Shel Silverstein’s poetry.

Class over, the teacher patted Sophie on the head and said, “See you next week!”

No, I told her, you won’t. For now, we’ll stick to Saturdays.

Quietly, one of my mom friends asked a good question. “How will Sophie feel about that?”

Crap.

That night, for the first time ever, Sophie stood at the kitchen table, pretending it was the barre, and showed me her some of her moves. Of course.

At least we’ll have Saturdays, I thought.

It was just dance class. But I’ve thought about what happened all week, unable to write about it, which as you know is not like me. It was just one of those moments that was so charged, and so symbolic of so much that’s going on right now with Sophie.

The special ed teacher called this afternoon to say that Sophie pulled the teacher’s hair today when she was told to put a book away. That is not my Sophie. At dinner, she tells my father school is too hard. She’s frustrated. And if second grade is too much, wait til she gets to third.

I put a call in to a special ed lawyer today. I need an outside opinon about what to do about school. I’ve needed one for a long time. That moment in ballet class was a much-needed kick in the pants. We can walk away from Monday ballet lessons — even if it’s painful — with no real ramifications. But we can’t walk away from school. Or life. I need to figure this stuff out.

It’s growing pains. I know that. I have a new friend at work. She’s very young and very wise. And very tall – six feet. Just last week we were talking about nothing in particular and she told me about how when she was a little kid, it seemed that every time she got a fever, she grew.

Sitting with Sophie for those last few minutes of ballet class the other day, I thought about my friend’s story. It’s funny. For as shitty as I felt about what happened, and my own culpability in it, when the girls and I walked out of the studio that day — on our way home, to get that Olivia toy — I felt a little taller. Or at least like I was starting to figure something out.


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Party Hat

Olivia the Pig and Harriet the Spy Hit the Candy Trail

posted Monday November 1st, 2010


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Party Hat

Candy corn and chalkboard pumpkins were on the agenda at our house this week.

I was a little nervous after my flamin’ hot Cheetoh experience with last year’s candy corn, but I have to admit it came out quite well this time around. I love this recipe.

The other Halloween craft was better in theory than execution, but still fun — and calorie-free. We sprayed pumpkins with chalkboard paint and gave them to second graders, along with chalk. Turns out, the smaller pumpkins are harder to work with, and second graders really have no idea what a chalkboard is.

So I’ll just show you the blank slates.

Sophie will be Olivia the Pig for Halloween this year (“of course!” she says if you ask) and I broke my Halloween rule and let Annabelle switch from Autumn to Harriet the Spy (she begged and Harriet’s my favorite), so we’ll spend the weekend trying to recreate Harriet’s spy belt. Poor Annabelle — that navy blue hoodie will get awfully hot; it’s 90 today but expected to dip below the mid-80s by Sunday.

But a girl’s got to be a slave to her vision. I get it.

Have a happy and safe Halloween, everyone!


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Party Hat

Autism Quotient, Autism Schmotient

posted Thursday October 28th, 2010

I asked a question on Facebook the other day:

I am curious: What do people think of this Autism Spectrum Quotient thing? I actually know people with autism, and find it a little — well, what do you think?

I got some long, thoughtful answers, but my favorite, frankly, came from my old friend Tim, who wrote, “Autism is the new black! Gimme! I’m waiting for the app.”

You might have to know Tim to appreciate this fully. Anyway. I am a little disturbed by the test and the flipness with which people are taking it and discussing. Autism is a really freaking serious thing, to a lot of people.

But as usual, I had to wonder if I was overreacting. So I emailed my friend Denise Resnik, who founded a large autism support group in metro Phoenix (and way beyond — the place is really a mini-city of services, check it out: autismcenter.org) and asked what she thought. She hadn’t heard of the test, which she immediately looked up. She took it as though she were her son, Matthew, who has autism, and responded that yeah, he (she) scored high.

As usual, Denise was a little too politic for my taste (hey, she’s got an organization to run, I get it) but she did point me to this video, which I have to share. Ignite, if you are unfamiliar, is an occasional event at which all kinds of people get up and give talks about all kinds of topics. Often the material leans toward more toward the whimsical or bizarre but here’s a video about how to raise a kid with autism. It’s excellent, and if you are interested in autism you’d be better spending a few minutes watching this than taking what I think is a silly test.


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Party Hat

The Birthday Gift

posted Tuesday October 26th, 2010

Tomorrow is my birthday. Typically, today is the day my sister and I start bitching, via text message, about how much we hate our birthdays. About how mere mortals (our husbands) can’t possibly match the glittery, over-the-top festivities thrust upon us, year after year, by our mother. About how we hate the attention, yet somehow crave more. About how birthdays (when they’re yours) always suck.

I realize (and so does my sister) that this is disgusting behavior. Somehow, we can never stop.

But I won’t bitch this year. I’m done complaining about my birthday. I’m not saying this will stick forever, but I think I can keep the vow for the next day and a half. That’s because on Sunday, I got a damn good birthday present. And a wake-up call about what matters in life.

Weeks ago, my mom started nagging about when and where we’d be celebrating the momentous occasion — the 44th birthday of her first daughter. After much eyerolling and stalling, then rescheduling and angsting over a choice that would please everyone from my father to Ray to Annabelle (Sophie’s up for a party anywhere, anytime — just like my mom) we landed on the patio at El Chorro, an old favorite that was recently renovated. The food, as Ray and I discussed on the drive over, is nothing fancy, though we joked that the people often are.

The weather was fireplace-perfect Sunday night, the sunset (see above) gorgeous, and I ordered a cocktail with muddled grapes, vodka and champagne. Hard to be grumpy.

And then something happened that took my breath away.

I had my back to the entrance, and when my father said to my mother, “Hey, look who’s here!” I thought, “Oh, ho-freaking-hum, it’s some country club friend of theirs.”

But it wasn’t. It was Muhammad Ali.

Muhammad Ali has lived in Paradise Valley (an appropriately named resort town tucked between Phoenix and Scottsdale) for a long time, and you hear often of sightings at charity events and such, but I don’t get out much, and I’ve never seen him in person.

I’m not a huge celebrity stalker. In fact, after a bad encounter with TC Boyle at a reading several years ago, I made a vow to never again approach a famous (or even quasi-famous) person I admire, for fear of being disappointed by the in-the-flesh version.

But this was different. This was Muhammad Ali. A guy who said whatever he thought and flourished anyway, because of his talent — talent that transcends even my disinterest in sports and dislike for the act of pummeling another human being.

A guy who — well, I don’t have to tell you. You know who Muhammad Ali is. But my girls didn’t. On our way out, we walked past his table and Ray asked if it was okay to say hello.

“Look, Muhammad, look at the cute kids!” his wife said, gently directing his gaze.

He reached his hand out and shook the best he could, first with Annabelle, then Sophie.

“Girls, this is the greatest athlete who ever lived,” Ray told them.

Of course we stood there awkwardly for just a moment too long, and another woman at the table told us it was time to get going. (Again, why I have a rule against talking to celebrities.) But I’m glad we did it.

Being near Ali, even briefly, was an honor. He was sharp in a blue paisley shirt and heavy gold link bracelets, his face frozen by the Parkinsons Disease that’s ravaged his nervous system. My father’s mother had early-onset Parkinsons and suffered from it for a long time, as Ali has, and oddly this elegant black man looked a lot to me like my long-departed, elegant, blonde Gommy. His hands looked just the same, the frozen, awkward fingers that couldn’t open a menu. The set of his mouth, the way he swiveled his entire body slowly to face the little girls my grandmother never met but would have loved so much.

Odd how a disease makes two people look the same, sort of the way a genetic condition like Down syndrome does.

They say Parkinsons can be caused by a sharp blow (or countless sharp blows, in Ali’s case) to the head, and family lore is that Gommy’s could have come from the nose job she got before nose jobs were popular — and perfected. Apparently the doctor used to whack you in the nose with a hammer to get things started.

Seeing Muhammad Ali — seeing that incredible person humbled by a horrible disease, humbled but still out in public, head as high as he can manage to hold it — made me realize how silly my little birthday thing is.

I am blessed with family, friends and (knock on wood) health. Oh, and a very promising looking basket from my mom, exploding with boxes from Anthropologie, covered with hot pink curly ribbon, waiting for tomorrow.

Driving home, Sophie fell asleep, and Ray pulled up a youtube video of Ali fighting for Annabelle. He told her about how Ali had refused to go to war (something I support, Ray not as much) and about what a hero he has been to so many people.

Later, I drove to Walgreens to get milk, and I turned on the 70s channel. Casey Kasem’s old show was on, counting down the hits, and Number 33 that week was “Black and White” by Three Dog Night.


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Party Hat

Family Wedding

posted Monday October 25th, 2010

Work anywhere for almost 18 years and — for better or worse — your co-workers start to feel like family. (And I’m not just talking about my husband, though I am lucky enough to work with him, too.)

Our particularly motley crew gussied up and traipsed out to the far west corner of metropolitan Phoenix on Saturday afternoon for a family wedding. Lilia got married. Standing around with cocktails, no one could remember just how long Lilia’s worked in the editorial department of Phoenix New Times, first as administrative assistant and now as an arts writer/calendar editor — we figured it’s been around five years.

I took care to sit on the other side of the aisle from my co-workers (except for Ray, of course), because I didn’t want anyone to see my cry. I knew I would. I’ve made some crappy hires in my time as an editor (including one former writer currently serving prison time — really) but I’ve made some good ones, too, and among the best is Lilia Menconi.

I’m tearing up, writing this. Lilia actually applied for a different sort of job, initially. Years ago, she worked for several months as Sophie’s nanny. I remember the day she rang the doorbell, still a college co-ed, dressed in khakis and moccasins and about a foot taller than me, rocking a casual, elegant style I haven’t seen leave her in all the years I’ve known her. I chose Lilia because we’d gone to the same high school and knew some people in common (it’s just no fun leaving your kid with a complete stranger, so I reach for connections) and I came to treasure her for her love of Sophie, her work ethic and her honesty.

“You know, I’m not a typical special needs mom,” I told her one day. I don’t remember the context of the conversation but I’ll never forget Lilia’s response: “Who is?”

Indeed. I think about that one often. (I’ve probably written about that conversation more than once on GIAPH already.)

Lilia was loving toward Sophie but never condescending, and when I’d admonish her to leave the dirty dishes in the sink she’d reply, “It’s my job to make your life easier.”

So when Lilia graduated the same month we lost our editorial assistant at New Times, it was a no-brainer — I launched a full-on campaign to convince her to come. I’m glad she did. I hope she is, too. She did a lot of shit work for all of us, that’s for sure, but along the way Lilia’s honed her skills and she’s a fine writer.

Also along the way, she met Lou. I don’t know him well, but he seems pretty groovy to me — he’s a musician, a little quirky and a lot in love with Lilia. And the guy can write. (We’re big on fishing off the company pier at New Times — Lou’s a frequent contributor to the paper.)

The wedding was absolutely lovely– DIY, full of energy and Lilia’s casual/elegant style. The bride wore moccasins.

I teared up (natch) when I saw Annabelle and Sophie’s names on the invitation; we dressed them in Lilia’s wedding colors and brought them along. I’ve never seen two little girls have such a blast. Annabelle pal-ed up with the flower girls and (literally) danced all night. (The little girls are all pictured above.) Sophie discovered the photo booth.  She also got to “party” with some of her favorite people in the world — my co-workers Paul, Rick, Michele, Claire. The list goes on. 

A highlight was sitting at dinner with Megan, who left the paper a couple years ago, but came back to be one of Lilia’s bridesmaids. Annabelle bestowed her highest compliment on Megan’s boyfriend, announcing that Oliver “looks just like a Beatle!” (he does) and Sophie snuggled up on  Megan’s lap, as content as I’ve ever seen her.

“It was perfect!” I whispered in her ear when Lilia bent down to hug me as we left — the cupcake “cake” had been eaten, the dance floor was starting to empty.

She laughed and promised to give me the inside scoop when she gets back from her honeymoon. For now, I’ll happily remember a lovely day. One of the best touches: Lilia had the genius idea of asking our colleague and friend Robrt Pela (the shopping enabler, you’ve read about him!) to marry her.

Robrt ordered himself a license (can you still get them out of the back of Rolling Stone?) and did a brilliant job. Afterward, he refused repeated requests from wedding guests who want him to perform their weddings. No way, he told them. He’s retired.

“Oh come on,” I said. “What if Sophie gets married?”

(And no, I haven’t watched “Monica and David” yet, though I do have it waiting for me on the DVR.)

“Oh all right,” he promised. “If Sophie gets married, I’ll order another license.”

I’m holding you to it, Robrt. I can’t wait.


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Party Hat

Curls

posted Thursday October 21st, 2010

I love the new Sesame Street song! In case you haven’t caught it, I’ve posted it here. It gave me a reason to crank up the way-back machine and dig up a piece I wrote when Sophie and Annabelle were much younger. Today, their hair isn’t all that different. (Isn’t that interesting?! Actually not so much — most curly-headed 2-year-olds don’t stay that way I know now), But when Annabelle was a toddler, she had an amazing head of curls. Sophie did not — and will not. That inspired this piece:

When Annabelle was a few months old, her straight brown hair fell out and she was bald. Ray and I watched her head for signs of curls, because in our house, hair is a big deal. Specifically, curly hair.

Both Ray and I had transformations when we learned to let our curly hair be curly. For me, that happened my junior year in college, when I spent a semester in London and got a spiral perm – going to the other extreme from my previous hairdo, which required hours with the blow dryer, round brush and curling iron.

OK, so with the perm I looked like Dee Snyder from Twisted Sister, but that was stylish in the late 80s, and finally, I felt good about myself. I dated cute boys all summer.

Ray won’t tell me exactly when his mother stopped blow drying his hair. I asked once and he got a funny look on his face and said, “You’re going to write about this, aren’t you? No way am I telling you anything.”

No matter. When I met Ray, he had dark curly hair and everyone told us how cute it was that someday we’d have a little baby with curly hair.

We did. By the time I was pregnant with Sophie, Annabelle had a full head of perfect blonde ringlets. Old ladies in Target would stop me to ask if I used a curling iron on my 2-year-old’s hair. No, just a bottle of No-More-Tangles at a time. When Annabelle’s hair is wet, it stretches almost to her butt. She loves to shake her curls. She knows they make her special.

And so when Sophie was born, I only had one question for the geneticist: Do people with Down syndrome ever have curly hair?

Even now, I can’t believe the words came out of my mouth. From the look on his face, neither could the doctor, a sweet older man with a booming practice and a packed schedule. It took months to get in to see him, and in that time, my husband Ray had become one of the world’s leading authorities on Down syndrome. Before the doctor joined us in the exam room, we met with a genetics counselor who gave us some history. “Down syndrome was first identified by a man named J. Langdon Down in the 17th or 18th century,” she started in a well-rehearsed spiel.

“Actually,” Ray said gently, “It was 1866.” After that, Ray did the talking and the genetics counselor took notes.

Since Sophie was born a year, I’ve taken a much different approach, which is weird, since Ray and I are both journalists, both in the habit of soaking everyone and everything for information on any given topic.

But this time, I don’t want to know. When I was little – and even now, sometimes – when I’d hear a noise at night, I would pull the covers over my head, confident that if I couldn’t see it, it couldn’t hurt me. It’s not smart, but it’s instinct — yes, there’s a difference — and I feel myself doing it now.

When I had the chance to take the amnio, I didn’t. I didn’t want to know. And now that Sophie’s here, I don’t want to know. I don’t want to know what’s lurking behind the corner, in the dark. I can only live with my baby in the present, and love her as much as I can and get her what she needs today. She’s needed a lot, so far – a feeding tube, open heart surgery, therapy three times a week. Eccocardiograms, medication. For months, we couldn’t lift her under her arms. (Think about how you always lift an infant.)

And now, one of those bands to fix her flat head.

With each challenge, I take a deep breath and focus on the immediate. I don’t think about — can’t think about — next month or next year or kindergarten or when she’s 18. I tell myself I can handle anything that comes along, and so far I have. If Sophie’s not like the rest of us, if she’s not like Ray and Annabelle and me, that’s okay. I just don’t want to know about it in advance.

Except for Sophie’s hair. I want to know about her hair.

The day before Sophie was born, I had an ultrasound. The technician never saw the hole in her heart, but she pointed out my baby’s hair, floating in the amniotic fluid. It was beautiful, and so is Sophie. She has a full head of straight hair. When the babysitters play with it after a bath, they can work a cowlick in. One of the residents in the pediatric intensive care unit said she looks a lot like Conan O’Brien. It’s true.

I keep watching for Sophie’s hair to fall out, to be replaced with thick ringlets like her sister’s. That sounds so ridiculous, almost cruel, to focus on something so petty when this child has a six inch scar running down her tiny chest and a future, if she’s lucky, bagging groceries. But selfishly, instinctively, I want her to be just like us. I want her to have curls. Not the kind you get from a perm or an iron, but real curls — snaggled-at-the-back-of-the-neck, need-to-be-coaxed-with-conditioner, on-the-verge-of-dreadlocks, don’t-touch-I’m-in-the-critical-drying-stage curls.

I don’t have curls anymore, not really. About halfway down that list of things no one ever tells you about pregnancy is a brief mention that your hair will change. I can barely get my hair to curl anymore, particulary given my time limitations in the morning. I love to say that Annabelle took my curls, and I’m happy she has them.

But I can’t give my curls to Sophie.

The doctor stared at me. Then he explained that people with Down syndrome do not have curly hair. African-American hair might wave a little, but otherwise, no.

I hadn’t read any of the books or surfed the web sites or talked to the parents whose names we get regularly, but I knew before I asked that Sophie’s hair would never curl, and I knew that there were so many things about Ray and me that I already see in Annabelle that I’ll never see in Sophie. But there will be hints, like in Sophie’s cowlick, or the waves that pop up just behind her ears.

And for today, that’s okay.


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“I Got Used To Sleeping With You.”

posted Monday October 18th, 2010

A thought occurred to me yesterday — somewhere between Portland and Phoenix — and I haven’t been able to shake it.

Sophie’s more demanding, but Annabelle’s got higher expectations.

That may not be the most P.C. of statements, and it may not be true forever, but for now I think I’m going to have to stand behind it. Funny that it didn’t occur to me til I got my four days alone with my older daughter.

I had a fantastic time in Portland.

When asked, Annabelle insisted she did, as well. But it’s hard to tell for sure with that one.

She registered some serious displeasure once or twice, and was certainly tired at the end of each long day, but for the most part seemed content. It’s just that Annabelle didn’t ooze joy in quite the way her sister does. She never does, I realized, as Annabelle napped against my side on the plane and I reflected on our four days together.

I know that’s typical. No one else I know wears her heart on her sleeve quite the way Sophie does. I was shocked on this trip to Portland to realize that in some ways, I prefer it.

Me, the one who doesn’t (forgive me, universe) suffer fools.

Sophie is so much harder than Annabelle in so many ways — and so often, that’s my focus. But in this case, for once, it’s the opposite.

I never have to wonder about whether or not Sophie is having fun. She tells me.

I worried all weekend about whether Annabelle was having fun, even though I shouldn’t have. She was enchanted by Portland, which she kept comparing to New York City, and her favorite part was when we wandered around downtown at night. We spent hours in the gigantic bookstore Powell’s, hunted for acorns, giggled with friends (both mine and hers) and she loved my very favorite store, the vintage treasure chest Flutter, as much as I do. (Maybe more. See her hamming it up in the picture above.)

But I worried about the stuff we didn’t have time to do, about whether she was missing Ray and Sophie, about whether I was much fun.

When we got home, Sophie opened her package of paintbrushes and hugged them like I’d brought her King Tut’s treasure. Annabelle curled up on the couch, quiet. Tired, I figured. She and Sophie took a bath and we had a brief family sing-along to Ray’s guitar, then it was time for bed. We tucked each girl in, and Ray retired to the bedroom after I claimed the TV.

The house was quiet for a while, then I heard a door open. I turned, looking for Sophie, my restless sleeper. Instead it was Annabelle. Red-eyed, she announced her stomach hurt.

“I think I’m lonely,” she finally admitted, after a long health-related quiz. “I got used to sleeping with you.”

In that moment, I knew without a doubt that Annabelle had a good time in Portland.

“I got used to sleeping with you, too,” I said, making room next to me, even though such behavior is typically forbidden past bedtime in our house. “Come here.”  

So Annabelle crawled on the couch and we extended our trip just long enough to see who got sent home on Project Runway last week.


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Party Hat

A Bouquet of Paintbrushes

posted Wednesday October 13th, 2010

“Sophie Day” peaked — then plummeted — when we arrived at the mall late this afternoon. We entered through Anthropologie, which happens to be a personal favorite of mine, and which is conveniently located near Lush, our ultimate bath bomb-destination.

Sophie found the one item actually not for sale in the home furnishings/clothing/accessories mecca: an artfully displayed pot of paint-splattered paintbrushes.

For a few minutes she played happily with them, allowing Annabelle and me to ooh and ahh over wool hats and teeny tiny rose shaped measuring cups. Then I noticed Sophie having a heated conversation with a saleslady, who was trying to explain that no, the paintbrushes were not for sale.

Uh oh. It didn’t matter that we have dozens of paintbrushes at home, that I had several in my purse and even an emergency pack in the glove compartment of my car. (And yes, I get how ridiculous the paintbrush obsession is.) Sophie threw herself and these particular paintbrushes down on the funky, distressed wood floor and sobbed. It took a good 15 minutes of coaxing by both Annabelle and me before she’d even lift her head.

By that point, I was exhausted. We were late to meet my parents for dinner and I hadn’t started packing for Portland — too busy celebrating Sophie Day, naturally. The day began with a play date with a friend from school, followed by a three-plus hour marathon at Chuck E. Cheese with two more friends, ice cream sandwiches and a LOT of tokens.

Then it was off to the mall, with a pit stop at home to change (filthy — thanks, Chuck E.) clothes.

It wasn’t what we did all day that got me so tired — more what Sophie did each time we had a transition. (Including the transition from home to her favorite place on earth — CEC.) She just absolutely refused to leave whatever we were doing. No matter how much I begged, cajoled, yelled and threatened. She went dead weight on me when I tried to pick her up. It usually took Annabelle to finally convince her to budge.

I stood in the middle of Anthropologie and watched Annabelle patiently whisper who-knows-what into Sophie’s tear-filled ear and thought (but did not say!), “Annabelle, we deserve a vacation, you and me.”

And so we will go, way too early tomorrow morning. (What was I thinking, booking a flight before 9 a.m.?) I’m dreading the goodbyes. They’ve already started. Tonight Sophie stood dripping on the bathmat, a cornflower blue towel wrapped toga-style (sort of) around her, and stared at me, her eyes getting redder and redder.

“Don’t go, Mommy,” she said.

“Oh Sophie,” I answered, scooping her up and helping her into her Dora nightie. “I’ll be back soon.”

She looked at me and sniffled bravely. (Crap, is she getting a cold?!)

I snuck into bed with her a little while later, to “cuddle to sleep.”

“Let’s talk,” she said, snuggling against me.

We chatted for a while, then I sang our traditional “Hey Jude,” and we both closed our eyes. I opened mine and watched her for a while. Sophie fell asleep holding my hand, the rest of her body slowly relaxing but the grip on my fingers just as tight as when she grabbed them.

I noticed that loose bottom tooth practically wiggling in the breeze and made a mental note to write the tooth fairy letter before I leave, and thought for a while about all the other stuff I better not forget to do before tomorrow at dawn.

Then I laid there for a little longer and thought about Sophie. I’ll miss her just as much as she misses me this weekend — maybe more — in a way I never thought it would be possible to miss someone, particularly (to be brutally honest) a “someone” like Sophie.

Life is funny that way, isn’t it? Sweet dreams, everyone! See you next week. I’m off to Portland to look for the biggest bouquet of paintbushes I can find.


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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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