How old are they? a cashier at the home supply store asks.
Fiona, Petra, and I are waiting for a quart of paint to get mixed.
Two and four, I say, tapping the heads of each child.
That one’s four? the cashier asks, looking at Fiona. She’s small.
She is, I say.
They’re the same size, she says, marveling innocently.
I nod. I like the cashier’s open attitude, and I know I’m going to be waiting a while, so I say, She has a chromosomal syndrome. Which makes her small. But I trail off, realizing I don’t have the energy today to educate beyond that. Fiona’s been recovering from an illness, and she spent the night kicking me awake.
Fiona sits down on the linoleum floor of the store. She flips through a paint brochure I gave her. In it, beautiful young couples dab streaks of teal and orange and maroon onto their white living room walls.
They’re both so cute, the cashier says and looks at Petra. Hi there!
Petra looks visibly concerned and inches toward me. She’s holding her baby doll, and she clutches the doll tighter.
Stranger danger, the woman mixing our paint says from behind the counter.
The cashier switches her attention to Fiona. Look at her, she says to the paint-mixing woman. Isn’t she cute?
She’s like a doll, the paint-mixing woman says.
What’s that?, the cashier asks, and I cringe, because I have to hear it again.
I kneel down and touch the hair of Fiona and smooth it and otherwise busy myself with senseless tending of my kid as I pretend not to hear,
Her features, they’re like a doll’s.
Yeah, the cashier says, still smiling at my kids.
It’s true, I think. Even moms of kids with Wolf-Hirschhorn syndrome admit that their kids have doll-like features.
(Do people ever tell you that your kid is like a doll? I once asked a mother of a one-year-old girl with WHS. I was holding her girl. She was maybe twelve pounds, just as Fiona was at that age. I hate when they say that!, the mom answered. I nodded.)
In front of a wall of paint chips, I have the impulse to engage with my kid in an intentionally non-doll-like way. I want to show the women that my girl’s not a doll, but instead a person, with opinions. I ask Fiona, Do you want a different catalog?
She nods yes.
What one do you want? I stand up, eyeing the wall of catalogs.
Fiona looks at them but makes no indication.
This one looks good, I say. It has people in it.
I hand her the new paint catalog, and she flips through it eagerly, all the while feeling the eyes of the women on us. My girl and I are on stage.
It’s a stage I first learned that I stood upon when I become a new mother, and it’s a stage I think all mothers, maybe all parents, suddenly find themselves on, especially in public when an outing with one’s kids attracts onlookers. People marvel and comment, they compliment and advise. But it’s a particularly tricky theater with Fiona. I fret about a variety of narratives that could form in the onlooker’s mind, one of which goes: Small, Cute, Doll, Disabled, Spectacle. I want to offer the counter narrative: Small kid, Regular Kid, Regular Person. The longer an onlooker stares, the more I’m convinced I’m losing ground.
I can’t pretend to know what the women at the store are thinking. Maybe they are indeed thinking, My, what a cute kid. Maybe they are starting to think, That kid can’t talk. Maybe they are starting to think, That kid’s obviously not a regular kid.
My hope is they are thinking, That Mom talks to her kid like she’s a regular kid—that kid is a regular kid!
But I have no idea. The paint-mixing woman hands us our quart of Marine Blue. I thank her and tell my kids to say goodbye. Petra says Bye. Fiona raises her right hand and waves it towards herself.
Later in the day, when the kids are asleep, I read this quote from Kenny Fries, a poet and nonfiction writer with a physical disability: I’m not really someone who climbs on the barricades or collects signatures for petitions. Personally, my kind of political action is to be anywhere where my presence disturbs the status quo – whether that place is a bank, a university, a public toilet, a gay bar or any place else. I’m kind of a walking political statement, even though I’m not always aware of that.
I wonder if that’s what I felt at the store: the realization that my girl and I were a walking political statement. The weight and the pressure of that, as we ever-so-gently disturb the status quo. I was trying to etch my statement into the air between the paint aisles. It’s a lot to ask beside a wall of Marine Blue and French Rose and Hawaiian Sky.