The statewide Special Olympics cheerleading competition is coming up later this week, and the members of Team Tempe are as ready as they’ll ever be.

They’ve cheered at basketball games, competed in the regional competition and practiced just about every Saturday since December.

A funny thing occurred to me at practice this morning: I’m going to miss cheer. Me, the one who was so horrified at the mere suggestion.

Sophie and I both started out pretty lukewarm.

I spent the first several practices with my teeth gritted, wondering what my kid was really getting out of it — certainly not much exercise, since these cheers are mostly a lot of arm waving. She memorizes much more complicated routines in the ballet classes she takes with typical kids.

I couldn’t see how she’d make friends out of the deal, either. With the exception of one girl her age she’s already friendly with, the team is pretty much all adults. Which would be fine (Sophie loves adults!) except it’s a fairly quiet, withdrawn bunch. Several weeks in, Sophie still hadn’t really cracked the nut with any of them.

But we’d made a commitment and Sophie liked the uniform and the pom poms, so we kept going. And in the end, we both got into it.

Really into it, I’m embarrassed to admit. Two weeks ago at the regional competition, I — well, the best way to describe it is that I kind of lost my mind. There was a big auditorium with a judges’ table and a whole bunch of teams lined up on the sidelines. When Team Tempe took the stage, I found myself moving forward and practically taking the stage myself — standing behind the coach, smiling and mouthing the cheers, pantomiming the moves, almost panting with excitement and nerves.

Afterward, I had to shake myself like a dog and wonder, “Why did that seem so familiar?” Then I realized, in horror, that I am no better than reality TV’s Dance Moms; on par with Toddlers and Tiaras.

I had to put on a big smile when Tempe took second place to Mesa — out of two teams in their heat. It didn’t matter to Sophie, she was thrilled with her silver medal and the joy of competing, not to mention the cupcakes handed out afterward.

I was careful to keep frosting off her uniform, but her mouth was covered and I panicked for a moment, looking around for a bathroom or a drinking fountain. Then I saw Robert. He’s the only male on the team, a quiet older guy with a sweet smile. I’d never seen him and Sophie interact, but here he was — and he was holding out a wet paper towel.

That’s when I realized what this whole cheer thing is about: teamwork. True, the routines aren’t anything super fancy, but they require concentration and symmetry. They require the group to work as a team. (And it doesn’t hurt that their coach is terrific — kind and understanding but also down to earth and funny.)

I watched this morning with new eyes, and saw Ursula, the grande dame of the team who came to the competition decked out in sparkly eyeshadow and brand-new white Keds, greet Sophie with excitement. At the end, when I said to Sophie, “Hey, Babycakes, let’s go,” another team member, Colleen, giggled and said something I didn’t quite catch.

“You’d call her Small Fly?” I asked, confused.

“No,” Colleen said, rolling her eyes. “Small Fry.”

We both laughed.

Even though cheer’s not even over yet this year, on the way home Sophie and I discussed it and decided she’ll definitely sign up again next year.

She’s quiet, so I really have no idea where this came from. Well, technically, it came from the back seat of the car, as she fiddled (I thought it was fiddling) on her lap top yesterday afternoon. She’s growing up, my first born daughter — but not too fast.

On the brink of 12, she asked me to crimp her hair for her first school “social” last week, but she’ll still play with dolls for hours. Not long ago, she chose extra time on the beach over Disneyland. She really likes Abercrombie & Fitch clothes. A lot. But she doesn’t mind if they come from the thrift store. For now, anyway.

It’s a cool age. The calm before the storm? I won’t bet against it.

But if she listens to her own advice, even puberty won’t be so bad for Annabelle.

Anyone can dance
Never give up
Never doubt yourself
Always push ahead
Be yourself
Everyone is special
Love is all you need
Look at the bright side of things
Ending the bad is nothing unless you start the good

Scrolling through Facebook the other day, a status update caught my eye.

“crowd question: so what’s a disability snob?”

I can’t call the poster a friend, though we are, obviously, Facebook friends, and I’ll hasten to add that she seems like a cool person — one of the moms I’ve “met” virtually since joining the Down syndrome club. I didn’t stop to read the comments (and there were quite a few) — not for lack of time, but because I couldn’t bring myself to look.

“Really?” I thought. “Are we there?”

I knew what she meant even before I went back a couple days later to read the comments. She meant a hierarchy of disabilities — as in, “My kid’s disability is better (or worse, I suppose it works in reverse) than your kid’s.” Not that she or anyone actually puts it that way in the stream of comments, or claims to feel that way.

The whole thing has shaken me because at the same time I’m completely disgusted, I also can’t look away. Or stop thinking about it.

Am I a disability snob?

When Sophie was born, someone told Ray that Down syndrome is the “Cadillac of birth defects.” Almost 10 years later, I’m still trying to figure out what that means. I can guess. I know the stereotypes associated with Down syndrome. I also know that Sophie fits some and not others, that she is a person both defined by her disability and so totally not defined by it. But yeah, of course, defined by it. Totally. To say otherwise is to tell one of the pack of white lies we tell ourselves all the time, just to get from one end of the day to the other.

Am I a disability snob? I am a Sophie snob. I’l admit that. And you’ll have to excuse me if I admit that I’m not sure how I’d handle it if she had some other chromosomal composition or a different kind of a disability; you’ll have to pardon my honesty because the truth is that I don’t know. Just like I had no idea — never even entertained the idea — of how I’d react if I had a kid with Down syndrome.

I don’t think most of us go there. Oh, we do now — at least I do, I’ll admit that, too — now that I’m in the club. Do I stand at Special Olympics cheer practice and watch the other participants and wonder what it would be like if that girl was my kid, or if Sophie will be like that woman when she’s older? You bet. I wonder about their diagnoses, what it’s like to have that diagnosis. And when it’s a person with Down syndrome, I study that person, trying to figure out how Sophie compares. How she ranks. All the fucking time.

Does that make me a disability snob? Maybe. I’m not interested in trading Sophie in. We’ve made it this far together. I’ve kept her alive; her head fits perfectly against my chest at night when we watch TV; I won’t let anyone else (ok, my husband) kiss me on the lips. I adore her, including the idea of her. (Which is not to say that we don’t have our tribulations — or that I’m not terrified about the future, for both of us, for all of us.)

I’m partial. But a snob? I’d like to think instead it makes me another insecure mother, shaken by the universe into never taking anything for granted again.

I’ve spent the last couple weeks doing some really intense interviews for a story for my day job; I’m profiling a woman who became a paraplegic after she was shot with a gun. The other day she told me that after her injury, she would sit in her wheelchair and stare into the depths of the swimming pool, thinking about how to get herself to the bottom of it. When she wasn’t doing that, she spent hours considering which horrible health conditions she’d be willing to trade the universe in exchange for her spinal cord injury.

Is this woman a disability snob?

Why even go there? This woman doesn’t; not so much, not anymore. She suffers almost constantly from pain — phantom pain in places where her body isn’t supposed to feel it anymore — and she’s found that the only thing that makes it better is to keep busy. (Lucky for our community, she’s chosen advocacy and she’s damn good at it.)

I know how she feels. As we filed out of Special Olympics cheer practice last Saturday morning, I heard the other moms and dads murmuring to their children, urging them to hurry. “We have so much to do today!” one said and I thought, “Yeah, just like us,” then paused to think about how much of what we do all day is manufactured — classes and clubs and activities to fill the hours, to numb the pain.

Hey, when all is said and done, aren’t we all just trying to get by in the world?

The questions remain unanswered. Just what is a disability snob, and am I one?

I’m sorry, I really can’t answer. I’m just too busy to say.

She might have been on time, if not for the umbrella.

Rather, the lack thereof.

Here’s the thing. We live in Phoenix. We have no need for umbrellas. Even on the rare rainy day, it’s not like you’d actually walk down the street to get to your destination — instead, we race a few feet from the house to the car, from the car to the school/office/grocery store/mall. Anyhow, umbrellas are a pain in the ass — they get wet, they break, they never open or close when you need them to. Mine never do, anyway. I’m lucky I live in a place where you really don’t ever need to actually zip a jacket — I can never get that to happen, either.

Sophie has no appreciation for my lack of coordination — or really, for much of anything else when she’s on a tear, as she was this morning. Mornings are tough. No matter how early we get up, no matter how much I plan ahead with bribes, outfits laid out, lunches pre-made, she manages to push me — and the clock — to the very limit.

I’m pretty good at staying within that limit, but this morning I didn’t account for the rain.

I say I’m pretty good. Actually, I kind of suck. I am a control freak. When met with another control freak, I — well, I freak. After many years I’ve realized that doesn’t work well with Sophie. When she gets it in her head that she’s in charge, yelling doesn’t work. I’ve found that distracting her with a joke or a game (“Let’s see who can get dressed first!”) can do the trick sometimes. But more and more, she’s onto me.

I can’t blame her. I get it. One recent morning, we had a particularly trying time getting out the door. Sophie pushed and pushed til my buttons were thoroughly pressed and we were both exhausted. We drove to school in silence, pulling up just as the bell rang. I turned around and sighed.

“I love you, Sophie,” I said. “That was a tough morning. Try to have a better day, okay?”

She shook her fist at me, grudgingly told me she loved me, too, then opened the car door and got out. Suddenly, she was no longer in charge.

It takes Sophie longer to get out than most kids, and not because she’s balking. She’s tiny, and though she’s well-trained by years of physical therapy, she’s still not well-coordinated. She climbed out of her booster seat, wrestled on her backpack, and with a heave, closed the car door, then walked slowly toward the playground, as other kids hustled by to get to class.

From the rearview mirror, I saw one of Sophie’s friends approach. Saw Sophie spot the friend. Saw the friend spot Sophie. And saw the friend continue at her much faster pace. Sophie started to run, trying to catch up. The friend turned to look, then kept going.

It was a glimpse into Sophie’s world — a world where she can’t quite keep up. Where she has friends, sometimes, and where she has times where she has to trudge to class on her own. A world where it’s hard to be in control.

Since that morning, I’ve tried to be more understanding when Sophie makes it clear she wants to be in control. And so even though we were both still in our pajamas with half an hour to go before school, this morning I sat patiently on the couch while she performed an impromptu play called “Sisters,” which involved two sisters, a game of badminton, and a few details I didn’t catch. I managed to get us both dressed (and get her glasses on, thyroid medicine taken, hair brushed — sort of) but we got in a tussle when, 5 minutes before the school bell, she was still busy on the Wii, creating a Mii for her homeroom teacher.

Still, I swear we would have gotten there on time if it hadn’t been for the umbrella.  When she saw it was raining, Sophie demanded an umbrella. I handed her a raincoat with a hood, explained she didn’t have far to go, that I didn’t have an umbrella for her.  She stomped her foot, announcing she wouldn’t go to school umbrella-less. I wanted to shake her, pick her up and toss her in the car, yell. Something. Instead, I sat on the edge of the bed and reasoned with her, pulled the hood slowly over her head. Made it a game.

“I’m sorry, Mom,” Sophie muttered as we pulled up to the deserted school yard after the bell. I got as close to the office as I could, preparing to race out of the car and hustle her in. To be totally honest, it was a time where an umbrella really would have come in handy.

Before I could open my own door, Sophie’s opened and out of nowhere, there was her wonderful aide. Holding a giant umbrella.

It was the smallest gesture. And the biggest.

The three of us grinned at one another, the aide expertly juggled that umbrella as she took Sophie’s bag and her lunch — and her hand. Sophie hopped out of the car and into her day.

“I love you Mom!” she called out, before I could say it first.

The other day, Sophie walked into the kitchen, threw her short arms around the knees of the man installing the cabinets in our kitchen remodel, and announced with Lena-Dunham-intensity, “Mark, I love you. You’re my valentine.”

Let’s just say the two of them had not spent much time together before this moment.

Mark smiled and looked a little freaked out and I smiled and looked a little freaked out — and hustled Sophie out the door to school.

To be fair to Sophie, Mark did seem like a nice person, and it’s true that she doesn’t do this kind of thing as much as she used to. When Sophie was 4 or so, I remember expressing grave concern to one of her therapists about how she would often run up to random strangers in the mall and hug them. The woman looked confused for a minute, then she got it.

“You think she’s going to do that her whole life, don’t you?” the therapist asked, smiling kindly — and condescendingly.

Well, duh. And although it’s gotten better in the last six years, I’m still not unconvinced. Yesterday was Valentine’s Day, and Sophie was in her prime — writing love notes, giving gifts, offering hugs and kisses. Pretty much acting like she acts every day, only on Valentine’s Day it’s cool to do that.

I know what you’re thinking — you’re thinking that really, it should be cool to do that every day, and that I’m uptight. I agree. But I’m also concerned that Sophie’s emotional thermostat is set too high — that she’s not able to appropriately manage and express her feelings. And that while that tends to be adorable on an almost 10 year old, it won’t be so great when she’s 20.

But the thing that worries me even more is that she’ll stop being that way.

I think about Megan, the bagger at our Safeway, who’s clearly been trained to never make eye contact beyond the “Thank you!” at the end of each shopper’s experience. Or any of the women with Down syndrome we see each Saturday at Special Olympics cheerleading practice. These women don’t offer hugs and kisses; they don’t even say hello. They shuffle past in their own little bubbles and I don’t know why. Maybe because when they were 10, their moms worried that some day they’d be grown women hugging strangers at the mall — so they began the task of wringing that out of them. (I can’t blame them. I know the kind of bullseye Sophie has on her. This is about more than niceties — it’s about safety.)

Maybe it’s just that it’s the wrong setting — and outside of Safeway, Megan makes Wii Miis for all her friends and kisses them on the tops of their heads. Maybe when they’re not at Special Olympics, Sophie’s fellow cheerleaders tell their moms they love them 10 times a day — and the truth is that the moms secretly love it.

I don’t know. And I’m afraid to ask.

Last Tuesday morning, Sophie followed me into the bathroom, took my hand, and placed it over her One Direction pajamas, over the big bump on her chest where the bones mended — first, when she was 4 months old, then 4 years.

“How does your heart feel?” I asked, smiling.

“Good!” she said. “I don’t need to ever have surgery again.”

Well, never say never. (I didn’t say that to her.) But when the cardiologist announced Sophie was going from annual appointments to every other year, it was cause for celebration, for sure. Ray typically takes her to these visits, and he took her to this one — reporting the details Monday afternoon on the phone as they left the doctor’s office.

“No restrictions!” he said; we were both thrilled.

Just one thing gave me pause — but not the way you’d think.

“He says she can take the ADD drugs if we want,” Ray said.

Fuck. To be completely honest, it was the one nice by-product of a not-entirely-mended hole in the heart — we didn’t have to make that choice. Years ago, chatting at a playground with an old family friend who is also a child psychiatrist, I mentioned that we quite sure Sophie had ADD.

“What does her cardiologist say about medication?” he asked.

“She can’t take it,” I said.

“Well,” he replied, “then you need a new cardiologist.”

No, I thought. I need a new family friend. That really pissed me off, that this guy would be so flip about my kid’s heart. I vowed then to not give that medication a second thought, even though I’ve seen other kids benefit, even as I’ve seen Sophie ping pong around life, obviously in need of some help.

Now we can reconsider. I should be happy about that, right? Instead, I’m just stressed out. And probably in need of some ADD drugs myself.

“I don’t want to see that woman,” Sophie said sharply as we navigated rain puddles on the concrete path to the little park and rec classroom where they hold practice for Special Olympics cheerleading Saturday mornings.

It had been a whole week, but I knew exactly who she meant. I’d been thinking about that woman, too.

She is middle-aged, hard to say more than that. Looks a bit like a school principal — tall, slender, in a pant suit (a little dressy for a Saturday morning), her straight brown hair cut to her chin. I figured she was the parent of one of the cheerleaders, but I didn’t know which one. Sophie’s one of the only little kids participating in cheer — the rest are adults. And the parents of the adult cheerleaders don’t usually hover in the back of the practice room like I do. Mostly they sit in a separate room and chat.

So although we were several sessions in, I hadn’t noticed this woman til the end of practice last week, when Sophie suggested that all the parents come in and watch a few cheers. The very sweet (and very good) coach agreed.

Afterward, the woman walked over to the gaggle of cheerleaders, pointed a long finger down at Sophie, nodded at me and asked dramatically, “Is she yours?”

I nodded.

“I want her!” the woman said loudly. “I’m taking her home with me!”

Sophie looked up, startled, then backed away.

“Say hello, Sophie!” I said, embarrassed. My typically friendly child shook her head hard, burying her head in my hip as I murmured, “It’s okay, she just thinks you’re cute, she isn’t really going to take you.”

The woman didn’t seem to notice. “She’s adorable!” she said. “And she’s going to stay that way!”

Then she turned on her heel and left. It was a brief encounter, but I thought about the woman all week. I wondered about her and her kid, wondered what diagnosis her kid has. Mostly, though, I wondered what she meant when she said, “And she’s going to stay that way!”

Did she mean that, like her kid, Sophie would be an adorable adult? Or the opposite? I’ll be honest — it sounded like the latter.

Another week’s come and gone, and I’m still not sure. I got Sophie in the door this past Saturday morning by promising she wouldn’t have to go near the woman, and when we got inside, I watched her carefully, trying to match her with a cheerleader.

Annabelle figured it out: The older woman’s daughter is a young, plump woman with Down syndrome — probably in her 20s, maybe 30s — with a blonde bob and glasses. In several weeks, I haven’t heard the young woman say a word. She stands quietly, pays attention, does what’s asked of her. She looks a little defeated. I’m not sure I’ve seen her crack a smile.

Despite the similar hair, glasses and features, the young woman’s not much like Sophie — who talks so much I wonder if the coaches lament recent innovations in speech therapy. Sophie’s a tiny, whirling dervish of questions, demands, jacket on and off, shoes chucked in a corner, always angling to stand next to the coach to cheer like she’s a coach herself, vying to be the one to yell, “Ready, ok!” And, yeah, adorable. I agree that Sophie is adorable.

So what did that woman mean? I don’t know; all I know is that she sort of scared the shit out of my kid.

Maybe we’ll find out next week.

I was scrolling through Instagram when the word “nigga” caught my eye.  Not something you see every day when you follow a bunch of food geeks and restaurant PR people.

It was part of a screen shot of a series of text messages — made no sense, lots of gobbledygook, dumb drunk behavior, it appeared to me. Then I noticed the comment below it from the user, a guy named Cord Chatham who goes by @inkedupchef.

His comment didn’t make much sense to me, either:

My young’n turned up to the corky from life goes on setting. #lmfao #jaguarsgoldclub #faded @rico602 #turnup #turnt #stroke #downsyndrome #corky

I couldn’t help it. I looked up the hashtag for Down syndrome.

I don’t recommend it. There — among some sweet shots of someone’s baby boy and someone else’s older cousin — are pictures of bug-eyed dogs, a shot of a heavily made-up woman (who does not have DS) and a man (who does have DS) and her comment: “At least il always know someone will marry me hahahah” (that one got 25 “likes”) and — well, you get the picture(s).

I did not look up the hashtag for Corky, the lead character on the 80s sitcom “Life Goes On.” I really didn’t want to see what else might be there.

At that, I should have moved on. But I thought about @inkedupchef’s comment last night, as I was falling asleep. I had to respond. Am I going to call people out on using the word retarded but let something like this go?

So this morning I wrote under his post:

I have a daughter with Down syndrome so I was excited to see your hashtag — but I’m not sure what you mean by this? Do you have a child with Down syndrome? I’m always looking for play mates for Sophie.

OK, I will be the first to admit to my own shitty behavior. Of course I had a pretty good idea that the guy didn’t have a kid with Down syndrome. I was quite sure he’d never met anyone with Down syndrome — probably never even watched that show.  (From what I know, the guy who played Corky is actually very bright, so perhaps not the best comparison.) I wasn’t expecting a response, wasn’t even sure I’d have the nerve to check for one.

I just wanted to let him know that someone who is close to someone with Down syndrome saw that screen grab and what he wrote underneath. And he could make of that what he wished.

A few hours later, I had a comment waiting. It left me speechless. What about you?

my youngest sister had #downsyndrome but she passed away when she was 6. But I was using it in regards to how drunk my friend was. I meant no disrespect to anyone whatsoever.

The other night at a gallery opening, a beautiful woman I don’t know very well approached me in tears.

“I need to tell you I’m sorry,” she said. “Do you know why?”

I did.

Back up 20 minutes. I was having a pleasant conversation with this woman and her date, a writer in from LA to do a travel story, and we were chatting about — oh god, I can’t remember what. It’s been two days, my memory doesn’t last that long anymore. Anyhow, something struck all of us as dumb and to tell you the truth, these days I’ll see it coming before it’s out of your mouth. It’s as though the sound (and there was considerable background noise that night — lots of people, kids screaming, a fire roaring, DJ blasting, traffic) fades away and the person’s mouth gets super big and the words come out really slowly.

“That’s so retarded.”

She said it. I didn’t flinch, and neither did she, but for less than a split second, I saw it — the “OH FUCK, I JUST SAID THAT’S SO RETARDED TO THE MOTHER OF A KID WITH DOWN SYNDROME AND NOT JUST ANY MOTHER OF A KID WITH DOWN SYNDROME, THIS ONE BITCHES ABOUT EXACTLY THIS ALL THE TIME. OH FUCK” look on her face.

And then the conversation continued — seamlessly, as though nothing had happened, I think the date said something like, “Yeah, that’s so stupid” and after a few minutes we all drifted into conversations with other people the way you do at gallery openings.

For me, the worst part these days isn’t when someone says it. It’s when they realize they just said it. And so that half a split second after she said it was what bugged me. But like I said, it was kind of a crazy night, and I moved past it because really, what are you going to do? It’s true that often I call people out, point out what they just said. But sometimes you don’t need to say a word.

This was one of those times.

Twenty minutes later I turned around and there she was.

“You don’t have to say anything,” I said. “Really, I mean it. It’s okay.”

“No, I do. It was a horrible thing to say,” she continued, the tears welling up. “I can’t believe I said it, I’m so upset that I said it.”

The date walked up and confirmed this, said she was so embarrassed he’d told her that if she didn’t apologize, he was going to do it for her. I winced.

“I hate being that person who makes anyone feel uncomfortable about saying anything,” I told them, even though all three of us knew that it’s more complicated than that. She’ll probably never use the word again, at least not without thinking about that night at the gallery. And that’s exactly what I want, right? For people to be aware of how wrong it is to use the word retarded?

Yeah, it is. But it’s not a sweet victory, or even bittersweet. Instead, the whole thing left kind of a bad taste in my mouth. Of course there’s no turning back now — I’m not about to embrace the word retard, to “take it back.” (I hate that shit — I mean, really, who ever wanted the word cunt in the first place?!)

I’ve set the wheels in motion and now my mere presence during cocktail party chatter is enough to bring a grown woman to tears and now I’m not really sure what to say about it. I hope I didn’t ruin the rest of her night, because truly, she didn’t ruin mine. I just hope she knows that.

“Is this a book for kids?” Sophie asked, shoving something in my face.

Considering she’d already asked this morning if she could watch an episode of “Girls” on the DVR (i didn’t realize I could move that quickly before 7 a.m.) I was ready to say no. Then I looked.

“Yes,” I said carefully, looking at the book in her hand, Judy Blume’s Are You There, God? It’s Me, Margaret. “That’s a book for kids.”

I read that book when I was in the fourth grade. Annabelle read it one summer — I don’t recall if it was the summer before or after fourth grade, or which epic camping trip we were on (Yellowstone, maybe?) but I will never forget the sound of the tent unzipping and the image of my daughter emerging, finished book in hand, eyes shining.

There’s something about Margaret that changes you forever. It’s not like you emerge fully prepared for adulthood, but it’s definitely a start.

“What’s it about?” Sophie asked.

Well, I told her, it’s about a girl who is going through changes — she moves to a new town, makes friends. My mind raced. What else do I say? To be honest, Sophie’s way more interested in puberty than Annabelle was at her age. A couple times a week she’ll take off her shirt and push her chest out to show me “they’re growing.”

They’re not, thank goodness, though she’d like them to be. She has several bras — but no real understanding of what it means to get breasts, or any of the rest of it. (Like any of us did, but you get my point here.)

As I write this, the book is forgotten; Sophie’s hiding somewhere with my iPhone, so I apologize if you get an early morning text from her. Funny, she can show me how to do things on my phone I could never figure out on my own. I guess it will be the same in reverse with puberty. I just didn’t think it would happen quite yet.

And to be honest, it will likely still be a while. Sophie’s really into chapter books, but best I can tell, when she’s on her own with one she never gets past Chapter One. When it’s time, maybe we’ll read Are You There, God? together.

Really slowly.