by Jamie Sumner
In loving memory of Elmer and Brada—you gave me grit and magic.
And to all the kids living with a disability: You are amazing. I’ll say it again. You. Are. Amazing. Don’t let anyone define you but you.
1
Symmetry
It’s kind of hard to watch The Great British Bake Off over plates of Stouffer’s lasagna. Especially since it’s been in the freezer awhile—the edges are dry and crusty. But this is about all the cooking Mom chooses to do. She says she likes to leave the fancy stuff to me. Really, though, she just doesn’t have the energy to think about fixing anything that doesn’t come with directions on the box.
Our TV is so old and tiny that I have to lean in to see what Mary Berry is pursing her lips about. The bakers are making English muffins, and she’s giving the stink eye to the redheaded guy who didn’t let his dough rise enough. If I were on the show, Mary wouldn’t have to tell me how long those muffins need to rise. Any fool with a Betty Crocker cookbook or Google knows to let it double. I pick at a shriveled string of cheese on my plate and imagine what I’d say if I could send her a note across the ocean.
Dear Ms. Berry,
As an aspiring baker over here in Tennessee, I’d like to tell you how much I love every single one of your recipes, but especially your Cappuccino Coffee Cake. I made it once for my mom, and she said both coffee and cake would never be the same again. I think she meant that in a good way. Also, would you mind sharing your secret to a good scone? Because down here all we’ve got are buttermilk biscuits—
Mom’s phone rings and now I’m left wishing I had enough sugar to try another batch of scones. The only ones I ever made came out so hard, you had to dunk them in milk to take a bite. Mom hits pause right as Mary is about to call out the top three English muffins. I already know which one will win. It’s all about symmetry. They have to look exactly the same.
Mom sets her food on the coffee table. She’s barely touched it, but she picks up her phone and walks into the hallway. She says “hello” like the conversation has already run an hour long. It has to be Mema.
I saw off another bite of lasagna with my knife and review what I’m going to say if the phone rings again and it’s about what went down at school today. But there’s not a single scenario where I don’t get grounded. Grown-up trumps kid like paper beats rock.
Mom leans back in from the hallway and mouths, “Chew, chew, chew,” like I’m five and still in feeding therapy.
I point at the phone. “Talk to your mother.”
Depending on how Grandpa’s been doing lately, this could either be a really quick conversation or a really long one. I take my chances and hit play.
I’m right about the muffins.
When Mom still hasn’t come in by the credits, I push back from the table and roll into the hallway.
She’s sitting on the floor with her legs stuck out and the phone in her lap.
“How bad was it?”
“He locked your grandmother out of the house and called 911 to report a burglary.”
“Whoa.”
“Yes.”
“Did the cops show up?”
“No. He’s done it enough times, she reprogrammed the emergency button on the house phone to go to her cell.”
“Smart.”
“Not smart enough to remember to put out a new Hide-a-Key. She had to get the neighbor to break a window.”
I can picture it: Grandpa whispering into the yellow phone on the wall about voices and eyes looking in at him from the dark. Poor Mema. I wonder which window they had to bust. I lock the brakes on my chair and hold out a hand. Mom takes it and stands up with a grunt.
“Nice.”
“Ellie, you’re twelve. Just wait until you’re my age. You’ll make all kinds of noises you never thought you’d make.”
She tries on a smile, but it slides off. I hate it when she does that, pretends everything’s rosy because she thinks I can’t handle it. But I don’t say anything, just grab her plate off the coffee table in the living room and roll on into the kitchen. I don’t know the last time Mom ate a meal all the way through. I pop her lasagna into the microwave. If it’s not Mema on the line, it’s Lauren, my aide, calling to tattle on me, which—I check the clock—might still happen tonight, with my luck.
I’m not a bad kid, really I’m not.
It’s just that anybody who sees a girl in a wheelchair thinks she’s going to be sunshine and cuddles.
Sorry for having an opinion.
Sorry for not thanking my lucky stars you get to follow me to the toilet three times a day, and sorry for not loving the fact that someone else has to carry my tray to the table at lunch and that I have to wait at the back of the bus, coughing in the cloud of exhaust, while the wheelchair lift goes down as slow as Christmas.
I’m sorry for needing a little space.
But mostly I’m sorry I let the whole being-stuck-in-a-wheelchair thing get to me today. I wish I could have brushed it off like usual. Then I wouldn’t be in this mess.
Mom wanders in from the hallway and slumps down at the kitchen table. The microwave beeps, and I plop the lasagna in front of her. It slides across the plate like a wet sock, probably tastes like one too by now. She’s rubbing her fingertips in a slow circle on the side of her head. I wish she would stop doing that—it makes me worry she’s going to go bald. I push the plate forward with one finger until it’s about to topple off into her lap. She picks up a fork.
“Chew, chew, chew,” I say, and roll into my bedroom to finish my algebra.
It’s almost midnight and I still haven’t started my math. I forgot to close the blinds, and the streetlight outside is casting an orangey glow across the walls, but I’m too tired to drag myself into my chair and deal with it. The chair’s sitting at a right angle to the bed, where Mom always puts it in case I need to get up in the night. Right angles. See, I don’t even need the math homework. My current skills are greater than or equal to whatever problem set is due tomorrow.
I could probably use some solid pluses and minuses to distract me right now.
I can’t stop thinking about what happened at lunch. It so wasn’t a big deal until everybody made it a big deal. I mean, I get it. Lauren’s whole entire job is to chaperone me from place to place, so when I pull a runner and disappear, it kinda makes her look like she’s slacking.
But Emma Claire wasn’t there today. She’s basically the one friend I have at school. She also has CP. Birds of a feather and all that. But she only has a limp and can still play soccer. I tell her she’s got a “touch of CP” and I’ve got the whole bucketful. We’re not close close. But at least we sit together. And when she’s gone, it’s just me in my cone of silence in the middle of the cafeteria.
So there I was, sitting at the end of the row of tables and away from everybody else like a doorstop, and it was loud, and not the kind of loud you can tune out. And it was chili day. The whole place smelled like meat chunks. Barf. So I packed up the sandwich I’d made with the cranberry relish and goat cheese, which Mom says isn’t a sandwich because it doesn’t have meat, and left. I just put it all on my lap and rolled on out and down the back hallway that leads to the exit doors by the gym.
I sat in a little ray of sunlight that snuck past the dumpsters outside and finished my lunch, and then the bell rang and . . . I just needed another minute, was all. Except when Lauren found me, I might have been dozing in the sun spot and it might have been after too much “travel time” had passed for me to blame it on the chair. But I wasn’t trying to skip class. Really.
The thing is, kids skip all the time, and yeah, they get in trouble. But nobody freaks out about it like they do with me because I’m a health risk. And okay, yes, it was maybe a teensy bit antisocial to go eat in a corne
r by the dumpsters, but sometimes it’s all just too much. I get tired of bearing witness to everybody else’s normal.
I never got sent to time-out when I was little. I think the teachers couldn’t bring themselves to lock me and my wheels in the corner. But I wish I could now. I wish I could just declare a giant TIME-OUT from school and people and take a long nap in the sun.
I think about The Great British Bake Off again and how happy the winner looked, holding up his English muffins like a doof next to tiny Mary Berry. I bet no one bothers Mary when she wants to eat alone. I bet she dines like a queen. One day I will write her a real letter and ask her to tea. I could handle company if it were Mary. We would sit in easy silence and let the food speak for us.
Two days later I’m at school, sitting out front by the curb and waiting for Mom to pick me up. It’s freezing. I don’t care what they say about winters in the South; it still feels like a bucket of ice water thrown over you every time you go outside.
“You want your jacket, honey?”
Lauren stands next to me with one hand on the back of my wheelchair. I shake my head, don’t look at her. I’ve got my backpack in my lap with my jacket inside. If I wanted it, I’d get it. I’m working too hard not to be nervous about this appointment to have any room left to make small talk with Lauren. It’s lunchtime and this is usually her “Ellie break,” but since the “runaway” incident, she hasn’t given me an inch of space. I can tell she’s ready to go inside to the teachers’ lounge, down a Lean Cuisine, and check her IG. I hate it when she calls me “honey.” She’s probably twenty-five at most. I wish we could just wait together in the quiet.
“We need to talk about what happened the other day, Ellie.”
I look straight ahead. I can feel her hands on her hips. She already called Mom yesterday, just like I knew she would. Mom cut all my screen time for a week. A WEEK. I wanted to explain myself, but I couldn’t get the words out. I’d rather lose screen time than tell Mom the truth and have her think I’m “not coping,” as she likes to say.
“Ellie, honey, you cannot wander off by yourself after lunch without checking in with me.”
“I was going to class.”
“I don’t believe science is by the gym, last time I checked.”
She should save the teacher tone for the teachers. I wheel around to face her and tap my forehead. “Oh, you know, little ol’ me just gets turned around sometimes.”
“Ellie, enough. You know your educational plan requires that I accompany you from the bus, between classes, and to and from the restroom.”
“So you’re saying I’m in trouble for . . . going to my class?”
That’s the thing about needing an extra-special plan just to go to school. Sometimes it helps. And sometimes it’s the leash you get tangled in.
For a second she almost looks embarrassed, and I start to feel a little bad for giving her the guilt trip when she’s not even the one who makes the rules. But then Mom flies up in the van and throws the automatic doors open like she’s at the Daytona 500. She’s an English teacher up at the high school and has to use her planning period to take me to my doctor’s appointments. It’s always a race across town to the children’s hospital. But we’ve gotten only one ticket. The other times the cop felt sorry for us. On occasion this whole “crippled kid” thing works in my favor.
Today we’re on our way to see the neurologist, the “head doctor” who reads my brain waves. It’s supposed to be science-y, but it feels a little like visiting a psychic and watching her pretend to tell my fortune. I’m trying my best not to pay attention to the worry that’s doing laps in my stomach. This appointment is a big one. It might really tell my future, and I’m not sure I’m ready to hear it.
“Where is your jacket?”
Despite the rush, Mom has all the time in the world to look me over while I’m riding the lift that folds down onto the curb like a hand opening and carries me up and inside the van. It’s like the world’s slowest amusement park ride. But she doesn’t wait for an answer, because I’m finally up now and locked in. We’re already going to be late. And I’m secretly glad. If it’s bad news, it’s bad news a few minutes later. I watch Lauren shrink and finally disappear out the back window.
Mom keeps checking her phone. I reach as far as I can and grab it from her.
“Ellie!”
“No texting while driving, young lady.”
“I wasn’t texting. I was about to text.”
“Same difference. Same eyes off the road. Text who?”
Mom doesn’t answer.
I don’t know why I ask. I know who. Dad. Dad the lawyer who never calls or comes to anything because he’s busy with his new family. Mom says he hopes to run for mayor someday. I bet he practices acceptance speeches in the mirror. The therapist Mom made me see for a while when I turned ten and starting ignoring Dad’s phone calls and emails said I have “unresolved issues.” She said I needed to learn to “express the hurt” if I ever wanted to have a “meaningful relationship” with him. But honestly, it’s been Mom and me for so long, I think I’d rather just leave him to his bright and shiny new family.
“He might make it this time,” she says eventually as we pull into the parking garage and the radio goes fuzzy.
“Sure. Sure.”
Mom and I both know Dad won’t be here. Even though this is kind of a huge appointment, epic maybe if it pans out the way we want, he still won’t show. He doesn’t do doctors or hospitals or sickness of any kind—which explains the whole leaving us when I was still a not-toddling toddler. Whenever he visits, I make a point to lean over and drool a little. This would be one of the “defense mechanisms” the therapist mentioned.
The doors of the hospital whoosh open, and a blast of heat smacks me in the face. The elevator to the doctor’s office tower smells like hand sanitizer and toilets, and it makes me wish I were back in class, which is saying something. A family sits under the television in the corner. The man has a long beard, and the woman wears a bonnet. Their little girl has neon leg braces, and she fiddles with their Velcro under her skirts. I want to tell the girl that the braces aren’t as bad as they seem, that she’ll get used to them. And I would tell her, if my voice weren’t caught on a tangle of nerves.
I stare at the TV for distraction.
“It’s always PAW Patrol.”
“You used to love PAW Patrol.”
“Yeah, when I was, like, five.”
“Well, there are a lot of little kids here.”
“Which leads me to my point.”
“Which is?”
“Why do I have to go to the little-kid doctor? It’s me and a thousand seven-year-olds in pajamas with their Build-A-Bears.”
“When you turn eighteen, you can go wherever you like.”
“Six years and counting.”
“Just don’t count too fast, okay?” Mom whispers, and untucks the end of my ponytail from my sweatshirt. Her hand is shaking, and I lean into it for a second like a cat until it stills.
She looks back down at her phone. Still no text from Dad. I’m half thinking about what comes next and half still mad over my conversation with Lauren earlier, when the door opens and a nurse steps out. “Cowan?”
Both of our heads snap up like we’re in trouble. We take a deep breath at the same time, like we’re going underwater, and then I wheel forward and Mom gets up to follow.
The exam room has planes on the walls in primary colors and a train rug on the floor. Who thinks this stuff up? Like making it look like a nursery means we don’t know what goes down in here? Needles and tape and cold hands and stethoscopes . . . and hours and hours of endless waiting. I get my phone out to Snapchat Emma Claire so I won’t just watch the clock. And she understands the doctor’s office torture—the jangly nerves and ticktock tediousness. I peek over at Mom to see if she’s going to get on me for being on my phone, but she either doesn’t notice or doesn’t care. But miracle upon miracle, before I can even hit the app, the door
opens.
“Hello, Mrs. Cowan and . . .” The doctor pauses to look at her chart. “And Lily.”
“It’s Ellie,” I say.
“And it’s Ms. Cowan,” Mom adds, but I don’t think the doctor hears her, or cares.
“Well, it’s nice to meet you, Ellie. I’m Dr. Reardon.”
I can tell she doesn’t like my nickname. When I was little and not strong enough yet to get my words to come out right, I couldn’t say my own name. “Lily” came out “Ellie.” It stuck. I’m not going to explain it to her.
“Ellie, I’ve been reviewing your charts and the most recent EEG.”
The EEG is a readout of brain waves, and if you squint at it, it looks just like the ocean with peaks and dips. I glance over at Mom, and she’s holding her purse tight to her chest like a little old lady on the bus. These appointments wind her up. She always thinks they’re going to be doom and gloom. Storms at sea. And this one is the big reevaluation, the chance to see if I’m still as seizure-y as I used to be. I’m not gonna lie, I’m a little wound up about it myself. I wish I had something to do with my hands, something to hug, like my old stuffed bear I used to take to all the doctor visits when I was little. We named him Carl, after the main character from the movie Up, because by the time I had learned to speak, I’d already rubbed his ears bald. He looked exactly like a little old man.
“And it looks like there’s been no abnormal activity in . . .” Long pause as the doctor flips through pages and pushes her glasses up her nose. “Almost six years.” Five years, two hundred and seven days, I think, but who’s counting?
Mom lets out a long sigh and slumps down a little in her chair. I kind of sag forward too and prop my elbows on my armrests. It’s like the good news chased out the worry that was keeping me upright. I can see Mom remembering the fevers and the shakes and the ambulance rides from the seizures. That part’s all a big blur to me. But the fear, like listening for the storm you know is coming, that I remember. I rock back and forth on my wheels, ready to get this show on the road. I’ve been telling Mom for years she doesn’t have to baby me, and now I have proof.