I’m a big fan of Ellen Seidman’s blog Love That Max, so I was really excited when she invited me to write a guest post. Here’s what I came up with, and I’m posting it here in case you don’t follow her blog (you should!) and in honor of Independence Day.

What my daughter lacks in gross motor skills, she’s always made up for in tenacity. Sophie has Down syndrome. She didn’t walk till she was 3, but from the time she did she’s been heading my way, starting long before dawn on most mornings.

I’m an early-to-bed-early-to-rise girl. Particularly as a working-outside-the-house mom, the hours between 4 and 6 am are sacred, a time to slip out of bed quietly and settle at the kitchen table with a laptop, coffee, and a dog or two at my feet. No humans. Bliss.

There’s nothing wrong with Sophie’s hearing. For years, now, no matter how careful I am not to knock over the toothpaste or slam the hall door, within moments after I’ve hit the kitchen, I hear a familiar shuffle of little feet and a tentative, “Mama?”

“Oh no, Sophie,” I say as soon as she appears in the doorway. “It’s way too early. Go back to bed! You need your sleep.”

By this time she’s made her way to my side, shaking her head as she burrows it under my arm for the first cuddle of the day.

“If you up, I up.”

If I’m up, she’s up. I sigh and remind myself that I should be grateful for this extra time, not so selfish. Sophie and I will part company in a few hours – she’ll go to school, I’ll head to the office – and evenings are hectic.

Still, I crave my own time.

Some mornings, she heads back to bed. Others, she finds her way onto my lap, demanding cuddles, Carnation Instant Breakfast, eggs she can crack into the bowl herself before I prepare them. I shoo her off my lap and hobble old-lady style to the fridge to get the ingredients for scrambled eggs, humming the tune to “My And My Shadow.”

Both my kids love rituals, and I love this about them. Sophie’s older sister, Annabelle, has a sentimental attachment to our annual family beach trip, to our Hanukkah and Christmas traditions, to the house she’s lived in since she was born.

Sophie has a sentimental attachment to her thumb, something that worries me more now that she’s officially a teenager. Mostly, she has an attachment to me. It’s not that she’s clingy, per se. When we are out together – shopping, get our nails done, at family gatherings – she’s social, engaging with others. It’s more than she has these mother/daughter rituals. Some of them crack me up, even when they make me feel claustrophobic.

For example, Sophie insists on sitting directly behind me in the car. (She’s still way too small to ride up front, to her disappointment.) If I’m driving, she sits on the left. If I’m the passenger, she must be on the right. This can sometimes get a little complicated, but is not typically a big deal.

Every night, she waits for me so we can put on our pajamas together. She asks me, “Nightgown or top and bottom?” And plans her own sleep outfit accordingly, so we match. She brings hers into my room and spreads it out on the bed, waiting until I’m ready so we can undress together.

“Ahhhh,” she sighs heartily, every time. “Don’t you just love the feeling of taking off your bra at the end of the day?”

I do. I laugh and nod. Sophie is getting her own set of breasts, and she’s very proud of them. Once we are in our pajamas, we sit in the same spots on the couch (dictated by Sophie) and watch TV shows she’s chosen (her favorites are Dance Moms and Project Runway) and “cuddle to sleep.”

Usually within minutes, she’s limp and drooling, sleeping so hard it’s almost impossible to wake her to move Sophie to her own bed, unless she’s won her daily negotiation to sleep in mine, in which case she rises happily and climbs into the king-size bed in between spots reserved for my husband and me, head on a satin pillowcase, hand wrapped around her favorite Piglet toy.

She’s so sweet, sleeping peacefully alongside my spot in the bed. But looks are deceiving. By midnight Sophie’s a whirling dervish, kicking her legs, flailing her arms, a tiny Ninja warrior in her sleep. And not so tiny anymore.

“Whatever you do, keep them out of your bed,” I warn mom friends with kids younger than mine. “I haven’t slept since I was pregnant!”

And yet, most nights, I give in. When I don’t, my husband does. Sophie has her ways. Mostly, it’s good, old-fashioned nagging. Often I’m reminded of Olivia the Pig, one of her favorite book-turned-television characters, and her mother, who ends many days by telling her child, “Olivia, you really wear me out. But I love you anyway.”

I try to stay up – there are dishes to wash, laundry to sort, office work left undone – but I never can. So I slip into bed beside Sophie, and drift off to sleep.

In the past few months, Sophie has started to sleep late in the mornings, and I wonder if things are all about to change. Will the hormones kick in, will she call me a bitch, refuse to let me touch her? Some days all I want for Sophie is for her to be “normal” — to grow six inches and 30 IQ points – and I know she wants that, too. As she grows older, she wants it more and more.

I spy on other 13 year old girls – at the mall, at ballet class, from the carpool lane when I drop Sophie off at school, and marvel at how grown up they are, so self-assured and independent. Young adults. I get flashes with Sophie – her birthday request for “high heels,” her love of sushi – then I catch her with her thumb in her mouth at a party and I’m pulled back to our reality.

The feelings ebb and flow but the truth is that Sophie is growing up, in her own way. Maybe someday she won’t want to sleep in my bed at all. At night, as I pull the covers up around both of us, I realize that in some ways – ways that truly surprise me — Sophie and I are both truly content. I try to live in the moment. Or at least get some sleep, since morning’s not far off.

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.

Sophie has been really into groceries lately.

Not eating them. Her four food groups are still rice, noodles, cheddar crackers and chocolate ice cream. I’m talking about groceries in the grocery store.

It began at Trader Joe’s about a year ago, when she developed an interest in scanning all the items in our cart. Not one to take no for an answer, Sophie didn’t even ask — just shoved the clerk aside and began pulling out wedges of cheese and baskets of strawberries, waving them over the censor and reaching for more while I did that Mom-Dance on the other side of the counter: “Is that okay? Are you sure it’s okay? Sophie, you better hurry, the line is getting longer. Let the nice man –”

Oh forget it. I began to seek out particularly cheerful-looking clerks and hoped for the best. Sophie walks out with a handful of stickers and a grin every time.

Last week she upped the ante at Safeway. We were grabbing a few items before a dinner party, so I hustled her through the store and past a million temptations (“Mechanical pencils, can I have those? And I really need a cute binder for choir. How about more cheddar bunnies? Can we go to Starbucks PLEASE?”) and into line, gratefully accepting her help when it came time to unload groceries onto the conveyor belt.

At 12, Sophie can still barely reach, but she was determined, stretching all the way over till it looked like she might actually flip herself into the cart if she wasn’t careful. But she’s always careful.

She couldn’t get around to the clerk’s side to scan items and her braces mean no chewing gum, so Sophie was clearly at a loss for a few moments for something to do or ask for, as she stood at the checkout counter. I was distracted, digging for my debit card, swiping, donating a dollar to the day’s charity because I’m that superstitious, when I noticed Sophie was no longer by my side.

I found her quickly. She’d moved to the end of the check out counter, and was quietly bagging our groceries.

I froze. “NO!” I wanted to yell. “DON’T DO THAT!”

From the beginning, when we first learned she had Down syndrome, I’ve been telling everyone who will listen how determined I am that Sophie never bag groceries.

It’s not that I have anything against grocery baggers. It’s honest work. And over the years, as I’ve discreetly (I hope) observed other people with intellectual disabilities bagging groceries, I’ve come to understand why it’s such a good job for so many. It’s done in a public place with constant supervision, bright lights, a lot of activity. The work is not easy and you’ve got to do it right or the eggs get broken, the bread gets smushed — so it’s valued, and that’s good. There’s conversation, music, community.

I still don’t want that to be Sophie’s only career option. I want her to do — well, anything she wants, right? Isn’t that every parent’s dream, what we whisper to perfect little babies as they sleep? “You can be anything you want to be!”

As far as I’m concerned, that’s a shitty thing to say to Sophie.

Lately I’ve heard a lot of talk about college programs designed for people with intellectual disabilities, and I think it’s awesome. I am confident that Sophie will be able to attend one, or do something else similar. It won’t be the same as what her sister Annabelle gets to do, there won’t be the same range of choices and brink-of-adulthood freedom — and Sophie will understand that.

And then what? What I don’t hear much is stories about people with intellectual disabilities having a lot of job choices once they do finish school. I’ve come to realize that it’s not so much that I don’t want her bagging groceries and more that I don’t want that be her only option.

But you know what else I don’t want? I don’t want anyone telling me that my kid can be whatever she wants. And I don’t want to tell her that, either. Because it’s a fucking lie.

I have a low threshold for inspirational sayings on a good day. On a bad one — keep me away from the Facebook Down syndrome groups and the memes in general. The other day someone posted an image of a cute, chubby boy with Down syndrome holding a sign saying, “I can do anything.”

Look, not to put too fine a point on it but I can’t do anything, either. Who can? I don’t see typical kids holding signs that say that because everyone knows it’s bullshit. About the only place it pops up for the rest of us is on the occasional fortune cookie. But for a little kid with Down syndrome it’s cute, because really, what sort of things will that kid want to do anyway? It’s safe, the kid doesn’t really get it, and the parents feel great. But really, what’s the point of the hyperbole? It might make you feel good as you scroll through your feed but in real life it’s just gonna kick you in the ass when you’re down.

Right?

I stood at the check out counter, debit card dangling from my fingers, staring at Sophie as she calmly bagged our paper napkins and instant pudding. How did she even know what to do? Is this, like, her birthright? Is it a genetic thing, that she’s drawn to this? I’ve never seen Annabelle do it. I know I never did.

I shook my head hard, grabbed my receipt, the bags and her hand, and headed out of the store.

Maybe Sophie will bag groceries for a living, I thought as we climbed into the car. Maybe that’s really what she’s suited for, what she’ll want. It’s so hard to know now. Or maybe she’s just a kind and helpful person — and a bit of a control freak.

Twelve is a hard age. Sophie is beginning to show physical signs of adulthood but she’s still such a little girl — twirling her hair, sucking her thumb, watching Peppa Pig. I’m pretty sure she was the only seventh grader who held her mom’s hand at “Take Our Parents to School” day at the junior high this week.

When I was searching for just the right junior high, a special ed teacher at a charter school who bragged that she had 20-plus years of experience with kids with special needs told me with great confidence that kids with Down syndrome stop progressing intellectually at 12. I looked it up and saw how controversial (and unproductive, not to mention hurtful) that comment was and soldiered on, ignoring it — for the most part. Sometimes it creeps back in, on a particularly bad day.

There are fewer and fewer bad days (knock wood) and Sophie keeps learning and growing. She is making friends (sort of), she is keeping up at school, her conversations are getting so mature and so (very slowly) are her television choices. She doesn’t always pitch a fit when I tell her to get in the shower or pick up her clothes (though she might be annoyed in an appropriate tween-y way) and the other day, when she overheard me telling a friend I needed to make a Power Point presentation for a conference I’m attending and admitting I’ve never made one, Sophie called from the backseat, “I’ll help you Mom. First thing you need to do is pick a background.”

So what background do I pick for Sophie? I guess it’s somewhere between “all cognitive growth stops at age 12″ and “you can be anything.” Finding that place is going to be a lot harder than building a Power Point presentation — even with Sophie’s help.