Last year just before Halloween we shopped for costumes. Each and every year for years before that I had lovingly and painstakingly sewed intricate costumes, despite knowing next to nothing about sewing, but now that Eric was of age to wear one I felt too exhausted to even consider sewing three complete Halloween costumes. Having already left things too late for mail-order the alternative was shopping in one of those costume warehouse places that appear mysteriously in September and are quickly replaced day after Halloween with red and green and Christmas kitsch. Never afraid to inflict three kids on a retail establishment, we went shopping. I use the term loosely. While the two older kids searched for items meeting their long list of needs (i.e. Star Wars, scary, black, and not-girly) and mine (cheap), Eric gleefully shouted and ran through the racks of costumes, digging his face into the fabrics, feeling them caress him over and over again.
“Eric! Stay here with me!” I cajoled helplessly, hoping he wasn’t pissing off the costume lady. Who would want to buy a costume with four-year-old kid-face wiped all over it?
“That’s okay,” the costume lady came over closer to him. She lowered her voice and looked meaningfully at me. “I have a brother.”
Having a kid with special needs automatically grants you membership in a certain club. Out in public, parents in this club meet eyes over the heads of their children, allowing a glimmer of understanding to pass between them. “I know,” that look says, “You’re not alone.”
Being a member of that club has saved me on occasion. Complete strangers have approached me, something I’d normally back away from, but because they identified themselves as club members I was open to their information about this medical practice or that medical condition or that therapy. Information that helped. More importantly, I knew I wasn’t alone. I knew my son was not alone. I grew to rely on The Club.
Not long ago I was in Ikea. None of my kids were with me. While I was there I kept running into a particular family and I couldn’t help noticing one of the kids, a teenaged girl. Petite, quiet, well dressed, and… did she? Yes. Down syndrome. I almost didn’t notice because I’ve trained myself not to stare. One quick glance and get out.
But I couldn’t help myself. Since Eric’s birth I’ve been fascinated with DS kids who are a little older than him. I’m always looking ahead for a glimpse into what he might be like when he gets to an age above his, to the next stage. Now that he’s nearing five and he’s out of the baby stage I wonder what’s coming next: how he’ll look, how he’ll act, and most importantly, how he’ll interact. With typical kids we take this stuff for granted. We know that they’ll grow up more or less like we did and just put their own spin on it. But it’s harder to look ahead for kids with special needs. There are so many permutations of normality. But by looking at other kids I can find a range of possibility for Eric, a template of sorts.
I so wanted to go up to this girl, so demure in her skirt and shy smile, and demand, “What will my son be like when he’s your age? What did you do “right” to look so… happy? Tell me my son’s future!”
But without Eric at my side, without him as my usual entry into The Club, I couldn’t make that connection with her or her mother, to plead, “Tell me what you did. She’s beautiful and perfect and I want that for my kid too. Tell me your secret!”
Nor could I tell her that I saw my son’s potential mirrored in her daughter’s eyes, that however wonderfully her daughter looked in her skirt and smile I knew there were also at least an equal amount of tears and tantrums that went into that one moment of perfection I was viewing. I couldn’t tell her I understood. I couldn’t tell her that she was my hope.
The mother saw me staring, and she glanced at me apologetically. “I’m sorry,” her eyes said silently, pleading for understanding, “My daughter has Down syndrome. She—.”
I looked away, not wanting to see the nakedness in that mother’s eyes. Not knowing how to tell her I was a member of The Club, only I didn’t have my hall pass with me to show her that though I didn’t know every step of her journey I knew enough to matter. Not knowing how much is okay to acknowledge (I have a son) and when it becomes intrusive. I looked down and they passed by.
I watched that perfect girl with Down syndrome walk away with her family. A piece of me went along with her, just to feel again like a member of The Club for one more short moment.