Sophie and I got our nails done on Saturday. Hers never take as long as mine so after she’d finished, she parked herself at the front desk of the salon and flirted with the young man who books appointments; he helped her download Pokemon Go and they exchanged Snapchat handles. As we walked to Trader Joe’s afterward, she casually told me she sent him a message on Snapchat:  “I have Down syndrome.”

I didn’t know what to say, so I just smiled and nodded.

Later, over Chinese dumplings, I asked if she’d heard back from her friend. No. She didn’t seem too concerned.

“It was a Snapchat, Mom,” she said in her best annoyed teen voice. Apparently a Snapchat does not require a response.

“So, he doesn’t know you have Down syndrome?” I asked her.

“No.”

“Oh. Who does know?”

She rattled off a list: me, her dad, her sister, her best friend since kindergarten, her nanny.

“Do your teachers know?”

“No.” She shook her head. “They don’t know.”

“How about Mrs. Wright?” I asked. Mrs. Wright is her aide.

“Yes. She knows. Tatum knows.” Tatum is her friend and classmate; she also has Down syndrome.

Eventually one of us changed the subject. It hasn’t come up again, but it’s been days and I can’t stop thinking about it.

Who knows? Who doesn’t? Does it matter? Does it matter that Sophie thinks people who do know don’t know?

Her teachers know. I’m sure of that. But — random people on the street? Do they know? Her classmates? What about the other kids at ballet class? We go days without talking about it and sometimes even I forget, for a while at least.  Then the clerk at Safeway looks knowingly at Sophie and mentions that she takes care of her sister.

Sophie’s in a blurry place, moving from kid to adult (“I’m a woman!” she tells me often) but still childlike in so many ways. Maybe. Maybe not everyone notices? Children don’t, not always. Just yesterday a friend messaged me about a conversation she had with her daughter. “[We] were reading a book on Helen Keller last night, which turned into one of our many conversations about how it’s totally cool to be different. So I asked [my daughter] about Sophie, asked if she noticed anything different about her. She said yes. “Sophie could do splits in high heels.” And that was that. She also said she wants to have a playdate with Sophie and Annabelle again.”

That’s awesome — I laughed and cried — but my friend’s daughter is 6. What about the grown up world, particularly now that Sophie’s growing up?

I’ve always felt that as far as challenges go, it’s a lot easier to have something that can be definitively diagnosed. Blood test, boom, she’s got it. Okay, now what? As opposed to, well, ma’am, it appears that your kid has (fill in the blank) but we’ll never know for sure. And we don’t know what you can expect.

Now that I think about it, though, I’ve only considered it from the parent’s perspective. What about the kid?

“I don’t want to have Down syndrome,” Sophie tells me from time to time, and I can feel the weight of that label on her shoulders. She said it again on Saturday night, over those dumplings.

“What don’t you like about it?” I asked, probing a bit deeper than I have in the past.

“I don’t know,” she said, dipping her head shyly.

“Does it make school harder?”

“Yes.”

“Does it make it harder to make friends?”

“No, that’s easier.”

That answer took my breath away. So matter of fact and so freaking deep — she realizes on some level that it’s easier for her to talk to people because the composition of each cell that makes up her being is different from mine. “It doesn’t make it easier for her to keep friends,” Ray said when I told him about it later. He’s right.

Sophie does not want to be defined by her diagnosis. I know that, we’ve talked about it. And yet she’s sharing it with people she meets. This is new, obviously a developmental stage, and one that has thrown me off balance.

Luckily, I’ve learned to let Sophie be my guide.

(Photo credit: Sophie.)

Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published by Woodbine House this spring and is available through Amazon and Changing Hands Bookstore. For information about tour dates and other events visit myheartcantevenbelieveit.com and here’s a book trailer.

I’m going to begin this blog post the way I’ve started countless blog posts before. I’m going to to tell you a secret.

Book publishing is hard.

Okay, that might not be much of a surprise, but it bears mention. It’s really fucking hard. You spend a hunk of your life writing this thing (in my case, about a hunk of my life) and then you send it off into a world packed tight with so much media there’s just about no hope anyone will see it.

I worked so long and so hard on “My Heart Can’t Even Believe It” – and I’m so superstitious — that it didn’t really occur to me for a really long time that one day I might actually hold it in my hand. And have to try to get people to buy and read it.

Before the book was released, I solicited advice from two dear, trusted friends, both of whom have published books.

One said:

“Emotionally, you have to pull off the trick of simultaneously not caring, while caring intensely….You have to have febrile faith in the book while accepting the hard fact that most people aren’t going to be interested. It is not fun. But you will get through it.”

(I thought that was very good advice, even though I had to look up the word febrile.)

The other said:

 “You WILL need to go guerrilla.”

And so I girded my loins, ready to enter the ugly world of book marketing. I prepared myself for unanswered emails, books sent to black holes, the cold shoulder from some corners of the disability community, since my book and I are neither reverent nor academic. I’m glad I was ready for it, because that part has not been fun.

But the rest has more than made up for it. I was so ready for the bad that I never stopped to contemplate the good.

I showed up at my all-time favorite bookstore, Changing Hands, on the first of May, with the goal of a. finding a margarita at the bar next door and b. not bursting into tears when I got up to read for the first time. I figured a few people would come (since I’d begged them). I was blown away. There, sitting before me, was my world. Ray, Annabelle and Sophie. My parents. The guy who married us. My best friends, early readers and late cheerleaders and people who have listened to me whine ad nauseum. People with kids with Down syndrome I knew; people I didn’t. Co-workers, co-writers, co-conspirators. Teachers, therapists. More family. One of Ray’s oldest friends. The love in that room, that day, was not like anything I’d ever felt.

And yet, I realized, as I stood there, that I’ve felt it all this time. These are the people, the community, the village, that raised us as Ray and I raised our girls.

I’ll never forget the beautiful, emotional introduction by one of my dearest friends, Cindy Dach, who once stood in the same spot and handed David Sedaris an ashtray (it was that long ago — he was still appearing in bookstores, one could still smoke indoors) and told him to go right ahead.

Later, Ray described it as one of the best days of his life. I agree. A month later, I still can’t believe it wasn’t a dream. May was packed with more amazing days — friends came from as far as San Francisco and San Diego to my Los Angeles reading, which was a wonderful reunion of old friends and a chance to make new ones. Antigone Books in Tucson was equally amazing. Just about every day of the month, it seems, there was a reading, a media interview, an event. And so much love on Facebook it was like having a month-long birthday but not getting older. (Or, as I have said more than once, like going to your own funeral.)

Hearing from people who have read the book has also been incredibly gratifying and humbling.

I am so spoiled. And so so so incredibly lucky. I’m also still working really hard to get the word out on the book. This month I’ll travel to New York City, Washington, D.C. and Denver. I’m bugging editors and reporters and folks who run Down syndrome groups, and I have a lot of newfound respect for anyone who works in public relations.

But mostly, as I head into June and beyond, I’ll be thinking about May.

Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published by Woodbine House this spring and is available through Amazon and Changing Hands Bookstore. For information about tour dates and other events visit myheartcantevenbelieveit.com and here’s a book trailer.

Dear Sophie,

You know, I have been writing this blog for the last 8 years — I started it on your fifth birthday, to document your year in kindergarten — but I’m not sure I’ve ever actually written to you, only about you. So today, in honor of your 13th birthday, I thought I’d write you a letter.

THIRTEEN! How did this happen? People always say this, but I don’t know where the time went. It’s my best job and greatest honor to be mom to you and Annabelle. It’s funny, for as much as you two have changed since you were born, I feel like I’ve changed just as much — maybe more. I’m not any taller, and I haven’t learned how to do as many things as you two have, but I think I’m a lot wiser than I was before I knew you. One thing I’m certain of is that I definitely don’t know it all.

I think you know, Sophie, that you are the first person with Down syndrome I ever met. I think you and I (and the rest of the world, for that matter) are only beginning to really understand what it means to have it. I know you don’t always want it. And I get that, even though there are things about you — your beautiful eyes, your long toes, your ability to see the good in almost everyone, as well as your skill of doing the splits at the drop of a hat — that I suspect are a direct result of that extra chromosome. But I get that some days, it feels like Down syndrome is holding you back, weighing you down, and I suspect it might feel a little bit like trying to swim in a pool filled with Jell-O.

As your parents, your dad and I consider it our job to clear obstacles in your path and help you get to where you want to go — or, at least, figure out the target destination. I know Down syndrome sometimes makes that harder, and most of the time, when we talk about it, I don’t know what to say. I know parents aren’t supposed to admit that — we are expected to have all the answers. But I want to be honest. That is why I sometimes just give you a hug when you say you don’t want to have it.

But today, I know exactly what I want to say to you, on your thirteenth birthday. I know that you are the one who will be blowing out the candles and making that big birthday wish, but I have a wish for you, too, dear Sophie.

Please don’t grow up so fast.

I am surprised to be saying that. You see, when you were born, I worried that in a lot of ways you would never grow up. Down syndrome can mean so many things for so many people, and we did not know if you would walk or talk or read books. We didn’t even know if you would survive heart surgery. And so I wished hard for you to grow up — to get potty trained so you could go to kindergarten, to learn to swim, to study math and science and all the hard stuff at school.

You did it. You exceeded our expectations on all of the above, but more important than that, you are growing into a young lady with grace, poise, mad style and a wicked sense of humor. I love to be around you. You are not just my daughter, you are my friend. And you are a friend to others. Almost every day this year when I dropped you off in the carpool lane, you marched right into junior high, usually pausing to wait for a friend or two (or two boys at once!). I envy that about your, your easy ability to make friends and your desire to celebrate them, like you did when you called your BFF Tatum onstage with you during your choir solo so you could sing to her and share the spotlight.

The other day you told me that the first thing you wanted to do when you finished seventh grade this week was go shopping for school supplies for eighth grade. You always want to know what the plan is for the next hour, day, week, month. You love to make plans — for sleepovers, college, career paths. I get that, I have always been the same way. But it’s funny, for as much as I’ve spent the last 13 years pushing you forward and worrying about you growing up, now I want to yell at the universe, “Slow down!”

Don’t grow up so fast, Sophie. Don’t be in such a rush. The other day, you and your sister performed in your ballet studio’s annual recital. This year’s theme was Peter Pan and I sat in the audience and cried, watching the two of you dance so beautifully, so grown up and still children in so many ways. There is no Neverland, no way to freeze you like this forever, as you stand on the brink of becoming a woman. I wonder, Sophie, now that you’re a teenager, will you still cuddle with me? Eat chocolate ice cream for every occasion, and not care at all if you get it all over your face? Suck your thumb? I hope you give up the thumb — those braces were awfully expensive — but never the cuddles. You will always be my little girl, even in the high heels and  hoop earrings that top your list of birthday gift requests.

I will be honest. I don’t know exactly what the future holds for you, Sophie. I don’t know what it will mean to be a teenager with Down syndrome. We will have to figure out that one together. But if the last 13 years are any indication, the next 13 are going to be pretty awesome.

Happy birthday sweet girl!

Love,

Mom

Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published by Woodbine House this spring and is available through Amazon and Changing Hands Bookstore. For information about tour dates and other events visit myheartcantevenbelieveit.com and here’s a book trailer.

I don’t hear it so much anymore, so I was surprised.

“I’m so retarded!” a brand-new employee said the other day, struggling to open a door with a new key card. We were coming back from lunch, and as we walked to the security office to get the key card, I’d winced a little, thinking about how colorful my own language had been over tacos and iced tea. This girl had barely said crap. (Literally — that’s the only off-color thing I’d heard.)

But she had no problem ripping loose with the R word. Usually that’s when I whip out my phone to show off pictures of Sophie. It was the girl’s first day; I let it go, sighing as I returned to my desk.

People aren’t using the R word so much anymore — not around me, anyway. And that’s good. But it’s not enough. Not using that word is only a start. The other night, a dear old friend made a reference to “special needs” — and not in a good way. I didn’t say anything. I didn’t have to — I heard her voice catch on the other end of the phone and winced myself, upset that she was uncomfortable.

We all do it, all the time. I do it, despite attempts to be aware. As a journalist I’m not super down with the word police. But I worry about what our words say about our thoughts and intentions, corny as that sounds.

Not so long ago, a guy I know was doing PR for the local Special Olympics chapter — until he tweeted a joke about special ed. The response was swift and firm — Jason Rose no longer has the bragging rights of working on behalf of the kids with special needs that he dissed.

In a perfect world, we’d all be so swift to respond. And we’d all have as much clout.

Before I had Sophie, the R word was one-dimensional, a meaningless put down. Down syndrome, special needs, special ed — all terms on paper. Sophie brings it all to life for me, and I figure  my — our — small contribution is bringing it all to life for others, too. Hence the Facebook status updates, the Instagram photos, the blog posts, the radio commentaries, and the occasional newspaper story, when I can convince my boss.

In-person introductions work pretty well, too. I think I’ll bring Sophie to the office next week during Spring Break.

The other day I opened Sophie’s school backpack and noticed she had a new set of folders — shiny, carefully labeled with each of her classes and in her favorite themes, kittens and nail polish. Her aide did it. She didn’t ask, or make a big deal out of it. She just did it, knowing Sophie would love it. And she did. Me, too.

A small kindness. There have been many, so far, as Sophie’s stuck a toe into junior high, a time and place typically considered the worst kind of viper pit. Not for Sophie, not so far. I get that we’re only two months in; there’s plenty of time left for problems, and we’ve had a few bumps so far. But not what I expected, certainly not what I feared.

My biggest fear, after safety, was friendship. Would Sophie wander around alone (with her adult shadow) — head down in that typical Down syndrome stance, with (horror) her thumb in her mouth? Would anyone talk to her? Would she make a real friend? I got an inkling things would be okay even before the first day of school, when we walked into the office to drop some paperwork off with the nurse and a kid I’ve never seen called out, “Hi Sophie!”

Even at a new, strange place, people know Sophie. And on the few occasions I’ve been on campus, it’s been the same. Kids and adults know her, seek her out, if only to say hello.

And beyond hello? It’s going more slowly, understandably. Sophie does still eat lunch every day with an old friend from elementary school who also happens to have Down syndrome. But a note came home the other day from a new girlfriend looking for a playdate. And I hear there’s a boy in Sophie’s art class who carefully arranges all of her materials each day so they are ready when she arrives.

A small kindness, and one I hope I didn’t end after Sophie proposed marriage to this boy.

Sophie has attended her first school dance, performed in her first junior high choir concert and later this month she’ll try out for cheer. The school has started a Best Buddies program; in a couple weeks she’ll be matched with her buddy. Sophie’s teachers report that she pays attention in class (probably not all the time) and raises her hand to answer questions posed to the group. She got a C on a recent science test that she took with no modifications. She still struggles in math.

This school has embraced my little girl. I called with a concern the other day, and I received a call back before day’s end from not just one administrator, but a group: the principal, vice principal, school psychologist and sixth grade team leader. The matter was quickly resolved, and I thanked them (profusely) for being so responsive, and so welcoming to Sophie.

“She’s already taught us so much,” one of them said with a happy sigh.

For her part, Sophie is still not so sure about junior high. Every morning, it’s a struggle to get her into her uniform and into the car, and when we drive past the turn off for the other neighborhood junior high — the one her best friend and most of her former classmates attend — she tells me, “I want to go to Sarah’s school.”

When we pull up to Sophie’s school, her sweet aide comes right to the car to get her. But she doesn’t want to get out. Sticks her thumb in her mouth, puts her head down, mutters that she’s tired. Junior high is really hard. I imagine the energy it takes Sophie to wind up and get going, to keep her thumb out of her mouth, her head up. Some days, kitten folders just aren’t going to be enough of a motivator.

After I drop her off I drive to the gym, and I will admit that I, too, have trouble getting out of the car to start my own day.

I hope sixth grade gets easier for Sophie, but really, I have to admit that she’s got it pretty good, hit the middle school jackpot. How do I explain to her that I’ve never encountered a kid — special needs or not — having such a good junior high experience?

For now I’ll focus on the small kindnesses, and hope that someday Sophie can, too.

I really should shove that in the box, I thought, rolling back the other way to avoid morning and the inevitable ouslaught in the wake of a vacation.

Or, I suppose, I could watch it.

Last summer — or maybe it was two summers ago — I started this collection. I was at an impasse with writing about Sophie, and when I find it hard to write I always fall back reporting (old trick, when your paycheck depends on your ability to produce journalism or some semblance). So I started gathering material in the form of any and all pop culture references to Down syndrome.

I bid on all kinds of things on eBay — dolls made to look like they had DS, and “tintype” photos from the early 20th century, of beautifully dressed children (always children, I guess no one lived to adulthood, or was photographically desirable by the time they reached it) with DS.

I didn’t win any of those, but I did wind up with a box of DVDs, VHS tapes, books, magazines and other stuff. My memory’s a little hazy, because I haven’t really opened the box since I started the collection.

It taunts me, from under a cabinet in my bedroom, and a few weeks ago I put the cardboard box inside a plastic Rubbermaid. Sort of like wearing two condoms, I guess. OK, the truth is that I’m scared of that box. Inside (as far as I recall) are the first season of “Life Goes On” (the infamous show starring that guy named Corky) and a lot of childrens books about DS I should probably show Annabelle and a lot of quasi-educational stuff I guess I should read.

But my coping mechanism (one of them, anyway) since Sophie was born has been to live in the moment with her, rather than look beyond her to others with DS, for clues. It’s tempting, which is why I stare at Megan, the bag girl at Safeway, and watch the other little girl at Sophie’s future school, the super smart girl who’s a year older.

And I keep telling myself I’ll open that box. Part of the reason for starting this blog was to force myself to start writing about the contents, item by item, rather than just amassing them. Anyhow, now the box is full, so I’ve got to do something. Start a new one?

Earlier this summer, a dear friend offered me an old copy of “Educating Peter” (a seminal documentary from a while ago, long ago enough that when the kid — portrayed in this doc as a grade schooler — finished high school, they made “Graduating Peter,” which Ray made the mistake of watching, at my urging, when Sophie was very young. It’s depressing; I hear EP is very good, though) and I took it, telling her I’d put it in my box. In a hurry, I left it in a pile next to the box, behind some suitcases.

Those suitcases went on vacation, revealing the tape. Maybe I’ll watch it, to avoid opening the box to try to cram it in.

Or maybe I’ll get on eBay and see what’s for sale.