“Camilla has Down syndrome. I don’t know when she was diagnosed, I don’t know how her parents have dealt with it, I don’t know what her day-to-day life consists of. This is what I do know: for the next week, I’m one of Camilla’s camp counselors.”
The sun beats down my spine, sweat drips through my hair, and my feet burn with impatience. Camilla walks slightly behind me, my body slanted towards her as I walk down the path. We’re silent; she’s annoyed that I made her leave the lake, and I’m fuming inside because everyone got to the Slip ‘N Slide a half hour ago and it was my turn to stay behind with her. Each time I get impatient, she smiles at me, knowing it’s working. We achieve our victories together: she shows her resolve by taking as long as possible; I bite my tongue and teach myself to be patient.
Camilla has Down syndrome. I don’t know when she was diagnosed, I don’t know how her parents have dealt with it, I don’t know what her day-to-day life consists of. This is what I do know: for the next week, I’m one of Camilla’s camp counselors. At Frost Valley, we have a village called MAC: “mainstreaming at camp,” which is designed for young adults with developmental disabilities to “mainstream” and hang out with other kids who don’t have disabilities. The goal of the program is to introduce all campers to people who are different than them, and to provide kids with a great camp experience who might not otherwise have one. I know that I’ve wanted to work in MAC since I was thirteen, and that I love just hanging out with these smart and funny kids. I know that Camilla’s favorite movie is Frozen, that she loves music about sex and drugs, and that she’s my age. I know that her favorite game is one in which she molds my body into some twisted mess, and then makes me dance my way out of it.
After an hour, we get to the Slip N’ Slide, greeted by a gaggle of twelve year old girls, yelling for Camilla. Camilla: the girl who smiles whenever you do, the girl who doesn’t put on her shoes, the girl who wears tutus. They run up and hug her, tell her how cute she is. She’s four years older than them. I stand beside her as they shower her with misguided love. Even as they baby her, they mean well. I know this. I fight the urge to pry them from her, to say, “You’re teaching her that it’s socially acceptable to hug every person you see! You aren’t helping her!” Not bullying isn’t enough — being nice isn’t enough. I realize last year, as a camper, I was as misguided as they were. They aren’t helping.
Loving someone when they’re cute and fun is easy. These girls love Camilla as she hugs them, as she passively sits while they braid her hair, as she smiles while they talk at her. They tie her shoes for her because they think she has a physical disability, too. They don’t want to say no to her.
When the girls leave, she gestures at me to put on her shoes for her. I tell her no, and we sit for twenty minutes while she contemplates her options. She cries, she begs. “You can do it yourself, Camilla.” She tells me I’m mean, she screams. “You can do it yourself, Camilla.” A fly buzzes lazily in my ear. A blade of grass bends beneath a soft breeze. The importance of time fades in and out.
“Do you want to tie your shoes in one minute or two?”
Silence.
“Do you want to tie your shoes in one minute or two?”
“Two.”
I set the time timer for two minutes, the red band helping her to visualize how much time she has left. When the red is entirely gone to leave only white, I look at her again. We’re both silent as she puts on her own shoes easily. We keep walking; I ask her about the books she’s reading, who her favorite superhero is, which Avenger she thinks would win in a fight. We sing her favorite song, “Jenny from the Block”, and stop to look at a beetle on the side of the path. Her shoes are on and everything is forgiven; she holds my hand and nuzzles my arm. Every day there are moments when we must both be hard on each other, but as soon they’re over, we go back. I keep her life structured, I make her do things herself, but I am still a fun counselor, I am still a friend. She knows I love her. It doesn’t matter if she feels the same way, although I know she does. I love her.
That night, at the camp dance, we walk in together. My friends wave as we pass, holding hands with their cute seven-year-old, non-MAC campers. They all stand together, joking and laughing under the lackluster disco ball somebody has put up on the ceiling. I stop for a minute to say hi while Camilla goes over to some other kids. My friends tell funny stories of campers wetting the bed and cutting each other’s hair. I soak in stories of camp that match my own from when I was a camper. It all feels so familiar — I know each story before they even leave my friends’ mouths. I laugh along and tell them how I had to play catch with Rachel for five hours one day after lunch, how Camilla tried to grind with another camper to a Justin Bieber song.
“It must be so hard.”
I don’t take in what my friends are saying. I’m doing a lot, but I can balance it now. I used to miss my friends, my “normal camp experience”, craving the cushion of familiarity. But I can do it: I know how to meet my campers’ needs, and how to respond to their anxieties. I can wholeheartedly sacrifice my time, my own interests to make them comfortable and happy. I am an active force in their lives; I love them when it’s easy and when it’s hard. I now know that just being passively nice is never enough.
I step out of my comfort zone and into the disco lighting, weaving my way through the crowded dining hall until I find my girls. Camilla, Rachel, Emma, Justina, Isabella… they invite me in, making space for me in the circle. After one song, a few counselors and I bring some of our campers into the room off to the side of the dining hall; the music is too loud and is causing some of them to have panic attacks. My friends dance. I deep squeeze Rachel’s hands to ground her. I hear someone laugh from the other room. I press down on Camilla’s shoulders in a soothing rhythm so she has something else to focus on. A dance contest starts. I hand a sensory tool to Emma to play with while we sit. We’re all together in half-silence, drawing in some coloring books and joking around. The music drifts through the bottom of the door and whispers all around us. I come to let some things go. I leave my watch in my backpack, I let the music play without me, I color the same picture for hours. My impatience is not gone, but coaching myself to forget it has become worth it. My friends are somewhere in the next room, but I’m right in the center of where I want to be.
|