Oh man, I hope Dorcas doesn’t read this.
Dorcas is my daughter Sophie’s physical therapist, and I believe I am only slightly exaggerating when I say that she, my husband Ray, and I are the three most important people in Sophie’s life. Because of Dorcas, Sophie walked before she was three (just a few days before she was three, but still, it counts). That’s late, even for a kid with Down syndrome, but we’ll take it.
At Dorcas’ behest, Sophie wears these horrible little foot braces that strap across her ankles, holding her foot steady inside clunky tennis shoes. The pediatric orthopedist didn’t want to put Sophie in braces. “She’ll walk, just give her time,” he said. Dorcas threatened to quit. He wrote the prescription. I’m not going to tell you that Sophie wears those braces 24/7, or even all of her waking hours. But her father and I are pretty darn good about putting her in them most of the time. “No shoes! No shoes!” she yells, so we distract her with promises of Chuck E. Cheese and Elmo’s World. She complies.
And the braces have worked. These days, just past her fourth birthday, Sophie even runs – she looks like a wind up toy, hips swaying, feet tapping, arms waving --- taking off down the hall, or the driveway, or the beach.
I took her to the beach last week. This is the part where I confess my sin: Sophie didn’t wear her braces on vacation. Not at all.
We got to the hotel room and I took off Sophie’s braces and shoes, plopped them on the dresser, and there they sat – the entire week. For one whole week, Sophie ran around barefoot, with the exception of a couple of walks across blacktop, for which she wore her teeny tiny purple Crocs.
While I’m at it, I’ll tell you that’s not the only rule I broke. (Crap, now I’m hoping Ray doesn’t read this, either. He really will kill me). With Sophie’s twice-a-week physical therapy sessions cancelled, no speech or swimming lessons or developmental pre-school or rehabilitation – and Ray delayed at home by a deadline at work – I was on my own. I went a little crazy. But you know, Sophie deserved a vacation. Her sister Annabelle is now six and a big first grader, but for years, when we dropped Annabelle at pre-school or Grandma’s, we told her, “Mommy and Daddy have to go to work. Your job is to play.”
It’s not that simple with Sophie. For Sophie, every childhood joy is a task: Blowing bubbles is speech therapy. So is drinking juice. Stacking blocks is occupational therapy. Just about everything else? Physical therapy. Sophie works hard, all day long. She doesn’t mind; she doesn’t know any different. And sure, we leave room for fun – like television (for the first three years, mostly signing videos) and visits to her beloved Chuck E. (putting those coins in the machines is great OT).
See what I mean?
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I didn’t set out to make this week at the beach therapy-free, it just sort of happened. The downhill slide began with the braces. It was a short walk from the hotel room to the sand, and why make a kid wear shoes in the sand?
By the end of the week, I’d given up straws for the sippy cups Sophie loves and the speech therapist hates. Both kids were eating ice cream for at least two meals a day. Neither had been to bed before 10:30 p.m., and I hadn’t combed Annabelle’s hair once. I’m not sure either’d had a bath that involved soap, and I’m also not certain the television was ever turned off.
We had a great time. I did draw the line when Sophie tried to paint my toenails with ranch dressing, but otherwise she pretty much got her way. Every day, Sophie ran back and forth to the waves, carrying buckets of water to make dribble castles (or just to dump on herself). Every night, we ate dinner on the beach – grilling was a pain, so we ordered Chinese, or pizza. The other beach dwellers stared in disapproval over their Martha-esque pitchers of sunflowers and bottles of chardonnay.
Oddly, no one stared at Sophie. Not one person stopped to smile sadly and tell me about the burden of their own brother/cousin/niece/best friend’s daughter with Down syndrome. In fact, I didn’t see a single person with Down syndrome all week.
I’m not religious – not at all – but looking back, it was as if Sophie had a vacation last week, and someone gave me one, too. Sophie’s first summer at the beach was no vacation. She was six- weeks- old. She needed open heart surgery, but they couldn’t do it for another two months. She had to get stronger. Sophie had stopped eating, stopped growing, so the cardiologist ordered a feeding tube. We made it to San Diego, but barely left the hotel room. I think I saw one sunset on the beach, that year.
Last week, I saw every sunset. Our last night on the beach, Sophie cuddled on my lap and pulled my hand across her chest, so it was resting on the bump her bones made when they mended together after the surgery. Annabelle danced around us, in the waves.
The next day, we packed. I found Sophie’s braces and shoes and turned to Ray. “Should I put them on her now?” I asked. “We’ll just have to take them off when we go through airport security.”
Ray frowned, and gave our typical response: “What would Dorcas say?”
So I took Sophie in another room, concerned our secret
would get out, and strapped on the braces, then crammed on the shoes. She
hollered, and at first, when I set her down, she stumbled. “Oh shit,” I
thought. But then Sophie picked herself up, took my hand, and together we
walked back to reality.
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