Fiona is getting sick again. After a week of being sick, followed by a week of getting well, followed by another week of being sick, followed by last week, when she was well, she has started showing all the signs of yet another bug: lethargy, pale face, bossiness and malaise and swelling eyes. Today her eyelids turned pink like she’s been eyeshadowed. Right now they are blooming into swollen round orbs the size and shape of quail eggs. Bulbous and tender and bright pink. When this happens, she often spikes a fever, and when that happens, she sometimes has a seizure, almost always while she’s sleeping. When she’s ill like this, she sleeps between my husband and me. She tosses and thrashes; she grunts; she kicks my back and she throws herself onto my husband’s chest. We don’t sleep well when she’s sick.
Last week, two people with Wolf-Hirschhorn syndrome died. One died during a seizure. May they both rest in peace.
We don’t sleep well when Fiona’s sick.
We’re on the cusp of autumn, on the brink of the season that sneaks us into winter, and winter is the season that notoriously knocks 4p- kids out with viruses and leaves them feverish, seizing, medivacked, intubated. Recently, several mothers took to Facebook to share their strategies for dealing with the anxiety of impending winter. Vent and let it consume you? Push it down, try to forget it, let it eat you from the inside? Somewhere in the gray ether is a different strategy, some wise alternative, but we can’t seem to find it. We fret and we pray and we try to sleep. We sleep to rest, but also to forget our lives; forget our hometowns, our shoe sizes, our many names and all that those names require of us. And then our alarms go off or our kids cry or shriek or whine for us, and our feet hit the floor, and we go. The day is a brain-scattering series of needs met, mostly someone else’s. Spoon-feeding or tube-feeding, diaper-changing and medication administering, therapy appointment arranging and insurance company calling. I’m tired.
But it is beautiful here in Vermont: seventy-five degrees, sunny, low humidity, with leaves turning apple red, and just a few falling graciously, as if to say, Look, this autumn thing isn’t so bad. It’s beautiful, really. Forget that it will turn into bone cold snow.
The trees are still full. Most are still green. Each of these days feels like a brilliant borrowing.
So today, on another brilliant borrowing, I took the girls for a walk in their double stroller. High of 79. Sunny. The sun beat down on my skin. It was warm enough for a day at the beach, I thought, and I turned right down a busy street of trucks and cars and motorcycles.
We walked a half mile, and then I opened the door of a thrift store. I held it open with my butt, leaned down, yanked the bottom of the double-stroller. I wheeled my girls inside.
Then I heard what I hear at least twice whenever I leave the house with my kids.
“Look, twins!” said a thin lady with white hair. She was standing at the checkout.
“No,” said the cashier. She knows me. She’s asked me the same question and I’ve had to explain.
“No?” the elderly lady said to the cashier. The tenor in her voice changed, from giddy delight to weighted confusion.
I pushed past the “brand new!” rack.
The two women kept talking. I heard murmuring, and then I heard sounds that sat on the register of pity.
Whatever. I was in a thrift store. I was in my personal mecca. I might find a four-dollar skirt, and my kids would find delight in passing their hands across the sleeves of many multi-colored polyester shirts.
I collected shirts and jackets. I pushed the girls over to a mirror. I made funny faces at them while I tried on clothes. Fiona was listing to the left, looking heavy and tired and pale. Petra was putting on a bucket hat and taking it off again and again. “Hat on,” she said. “Hat off.”
And then I heard over my shoulder, “How old are your girls?”
I turned around to see a middle-aged woman, her eyes sharp and curious.
There are many ways to say “One and three.” There’s the I’m so proud way. There’s the They exhaust me way. There’s the way I often answer this question, with a pleasantness that pleads: Please be okay with this answer. Please don’t make me address your concerns, your confusion.
Last week, two teenagers asked Justin the same question, which led to more questions, and then to the deepest strangest questions that a stranger can ask another, and that people with visible disabilities often report hearing—veiled versions of “What’s wrong?” or of “How did that happen?”
When Justin told the girls that Fiona was three, they asked, “Is she okay? Why is she so small?”
“She has something called Wolf-Hirschhorn syndrome.”
“Oh.” Then they went boldly where no stranger had gone before them, “Well, she’ll still live a normal life, won’t she?”
Justin was amazed at their brazenness. “No,” he said.
“Well….,” the said. “She’s still really cute.”
This time at the thrift store, tired from a nervous night of sleep, tired from the thought of another week with a soon-to-be feverish Fiona, I had no energy to venture down the road of “Explain your kid’s disability to me.” I tried another way to say their ages.
“One and three,” I said flatly, curtly — half fact and half challenge. As in, This is the facts, lady. These are my kids’ ages, solid as stones. You’re going to have to swallow these stones or let them fall to the filthy thrift store floor. But they aren’t mine to help you handle.
“One and three? But which one is three?”
My tone hadn’t worked. I tried it again, the same fact-flat tone: “The smallest one. The smallest one is three.” I put the clothes on a return rack.
“But the boy is bigger?” she said.
“They’re both girls,” I said.
Mistaken gender is something our culture apologizes for. Nosy questions about difference are not.
“She’s bigger,” the woman corrected.
“Yes,” I said. “The youngest is bigger than the smallest, who is older.” There is your koan, I thought, your Zen riddle. Chew on it. May it enlighten you.
I could feel the static in her brain. My children’s bodies did not compute with her expectations. She wanted to ask more and I wanted to leave.
I looked at my girls in the mirror. Fiona stayed slumped on her side of the double stroller. Petra said “Out.”
“And they’re both bored,” I said, to which the woman agreed.
So I left, out the door of the thrift store, into the near eighty-degree afternoon, with the light of the low sun goldening my girls’ faces. They squinted. I put on my sunglasses. I pushed us home.
And what is it, dear reader, that I want to say to you about this? Maybe you’ll think I’m not generous enough. Maybe you’ll think I should engage more fully with a stranger’s questions, take them as an opportunity to explain my daughter. I would probably think this about myself if I were you. But reader, I’m tired. Tired of hearing “Twins?” at least twice when I leave the house with my girls and tired of strangers demanding that I answer. I’m tired of the confusion my honest answer brings, and tired even more so, tired especially, of people commenting on the bodies of my children in ways that most people do not comment on the bodies of most adults. “You’re so short,” I never say to anyone. “My, aren’t you wide for your age,” or “Wow, you’re so old/skinny/stocky/loose-in-the-hips,” I never, ever say.
These lines of questioning seem like demands that I answer up for my family’s difference. They feel like tourism encounters, in which the questioner is the tourist, and my family is the tourist’s unique experience to have. Guess what I saw today? A three-year-old who was smaller than her one-year-old sister. These questions turn my family into a walking “See the Smallest Woman Alive!” show. Suddenly we are standing inside a box with a peephole, even while I thought we were at the farmer’s market trying to buy butternut squash.
When I pushed my girls into the warm September air, back towards home, I thought about the hours ahead. I would sit Fiona down in a highchair meant for a six-month-old, and I would spoon-feed her yet another snack, and afterwards I would change yet another diaper, and I would do these things with the knowledge that my daughter may never graduate beyond her need for me to do these things. And that is incredibly hard. So is the week we have before us, with another feverish, eye-swollen Fiona and another several nights of Seizure Watches.
But here is what I found heavier to carry on our walk home: an unexpected difficulty of this life has been the cultural response to it, the line of questioning from strangers, the probing What is wrong with her? The cold, snow-covered isolation of it.