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.