We had been at Disneyland for two long hours. Maybe she was staring at my pale pink Dansko clogs and the way they clashed with my all-black outfit. Or she might have been staring at Annabelle, who will turn five this summer but is the size of a two-year-old, with the attitude of a tween and long curly blonde hair. The woman probably wasn’t staring at my husband Ray, who comes straight out of Central Casting with the word “normal” stamped on his forehead.
No, this woman was definitely staring at Sophie, who is almost three. Sophie has Down syndrome. I was digging in the bottom of the stroller for goldfish crackers and juice boxes, so I’m not sure just what Sophie had been doing to attract this woman’s attention. Maybe waving furiously, or sticking out her tongue, or squawking loudly. I didn’t notice. But when I looked up, the woman was definitely staring. Hard. Sophie wasn’t even looking at her.
“OK,” I said to Ray through clenched teeth. “If that woman doesn’t stop staring at Sophie I’m going to walk over and tell her...
WHY DON’T YOU TAKE A PICTURE?”
Ray just looked at me, then looked at the woman, who was now tending to a gaggle of toe-headed kids around our daughters’ ages. “It doesn’t really seem to me that she’s staring at Sophie. Anyhow, so what if she is? I always stare at people with Down syndrome.”
It’s true. He does. And so do I. But perhaps for very different reasons than others do.
There’s this kid named Poco, who works as a bagger at our Safeway in Tempe. I always stare at Poco. I’ve noticed people noticing me noticing him. Poco’s never noticed me. Or Sophie. I always want to talk to him, but I don’t know what to say. “Hey there young man, I see you have Down syndrome. So does Sophie! Here, Sophie, blow Poco a kiss!”
It's bizarre that you can have a genetic disorder that causes you to look like all these other random people out there. Poco looks more like Sophie’s family than Ray and I do, and if an article I read recently in the Wall Street Journal is any indication, Sophie will likely want to hang out with people with Down syndrome when she’s an adult, rather than with us. And if that’s the case, Sophie should come back to Disneyland. Because The Happiest Place On Earth attracts dozens of The Happiest People On Earth. People with Down syndrome love Disneyland.
Now, that’s obviously a gross generalization, just like it’s a gross generalization to say that people with Down syndrome are the happiest people on earth, even though, between you and me, let’s face it, they are. A genetic disposition to happiness. How weird is that? It makes me sad to realize how unhappy most people are.
In any case, Sophie really did love Disneyland. Annabelle did, too.
(continued at right)
I only had an OK time. The truth is that Ray and I spent three days staring at people with Down syndrome. Each time, I’d immediately project into the future, and that person would become Sophie, and I’d imagine my life. It’s sort of like how, before I owned clogs, I used to stare at people wearing them, wondering how I’d look in them. Would I be able to carry it off?
“Red shirt, five o’clock!” Ray would announce, and I’d get a quick glimpse of a teenage boy with his parents, disappearing into the crowd on Main Street.
Often, there was nothing revelatory in the sighting. But Ray was in a funk for most of the rest of the trip after he noticed an extremely obese woman with Down syndrome. I didn’t see the extremely obese woman, but I felt like I did, because Ray described her in minute detail, down to the huge rolls of fat around her middle, and her waddle. He claimed that she stopped the crowd, that people stood and gawked as she walked by.
After that, he wouldn’t let Sophie have any French fries, and started complaining about how big her stomach is. Really, I think it ruined the whole vacation for him. I tried to explain that there are a lot of extremely heavy people in the world. Ray just looked at me sadly, and I gave up.
I know there’s a much greater chance Sophie will be fat. People with Down syndrome tend to be, well, chubby.
I tried a different tact. I started looking as hard as I could for other people with Down syndrome. And it was weird, because within just a few minutes I spotted a really skinny boy. “There!” I said to Ray. “Look! That kid was practically underweight! Did you see him?”
Ray didn’t look in time, and that was probably a good thing, because thinking back, I have to admit that I’m not 100 percent sure that kid did have Down syndrome.
By the end of the next day, we were all completely exhausted. Ray was still in a bad mood over the extremely obese woman, and by now he’d seen several more examples that proved his point. Sophie was starving, and Annabelle was asking when we were going home. Annabelle fell asleep in a rented stroller, so we decided I would take Sophie on the carousel.
Sophie’s not so keen on carousels. You’ve got to coax her on and ignore the squawking, and I always have to remind myself that it’s worth it, because by the time the music comes on and the thing starts to spin, she’s laughing hysterically, having a ball. But she was fighting me hard this time, so I almost didn’t notice the woman in the navy blue windbreaker whoosh past us.
I remember it in slow motion, even though the woman was running. She was older than the others I’d seen this week, the scrunched up face with the Down syndrome features unmistakable under a tangle of dark hair. She was running full bore to get to her fish (the carousel has a nautical theme), and the look on her face was pure bliss. The kind of look I’ve probably never had on my face.
We were about to begin when another party approached the line. It was a boy in a wheelchair and an older woman, I think the boy was in his teens. The woman must have been his mom. He was wearing a long red windbreaker, sort of a cape, and he was breathing through a ventilator attached to the back of the wheelchair. His mother didn’t look like she was holding up so well, but she stood her ground when the carousel operator tried to tell her she’d have to wait for the next go-round.
The benches reserved for the disabled happened to be just in front of Sophie’s fish, so I watched the back of that boy’s head for the entire ride. He didn’t move. Neither did his mom.
When the ride ended, the gate went down again, and the boy and his mom left. I unbuckled Sophie from the fish, and we got off. As we left the carousel, the dark-haired woman in the navy windbreaker raced past us, her face still beaming.
Even from a distance, I noticed she had a huge wad of boogers hanging from her nose.
I hugged Sophie hard, watching the
boy and his mom make their way down the boardwalk, and walked back to Ray and
Annabelle. I wanted to show Ray the woman in the navy windbreaker, but she
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