by Stacie Ramey
We are stopped at the traffic light leading into school. I use this for my next argument. My biggest one. “Mom?”
She turns to face me.
“What if this is as good as my CP gets?”
Mom puts her hands on the top of my head, smooths down my hair, and leaves her palms cupping my face. “First of all, this was never about your CP. I don’t even think of things that way. If I did, I’d lose my mind.”
She’d lose her mind?
“It has always been about taking care of you, Jenna, whatever that meant. But, if this is the best it gets, then we’ll take it. We’ll figure out how to make it work for you. But it’s not. I feel it in my bones, Jenna. We are going to figure out how to help with your pain and with your muscle spasms. But you have to trust us.”
The light turns green and some idiot beeps at us. Mom waves a hand in the rearview mirror as if that will make the person behind us suddenly be patient. She’s like that—the perfect combination of drill sergeant and big softie.
I know why she’s worried. I know she goes on those blogs of older people with CP. I’ve caught her, reading over her shoulder before she knew I was there. The blogs are mostly people her age who pushed themselves too hard and now their bodies are deteriorating. Fast. Those who used to be ambulatory are using a wheelchair. And that sucks for them, I guess. But Mom doesn’t get it. She doesn’t understand that accepting a wheelchair or a walker, while it is not every girl’s dream, is a hell of a lot better than not doing things you want. That a wheelchair can be a way to rest and get out from under the pain. Sort of wait it all out.
I’ve looked on some teen blogs, too. The college kids with CP. I hear them say that their bodies need more downtime. But they are living their lives. Aren’t they? “It’s not that I’m uninformed,” I say. “I know what’s possible, and I’m saying if I have to choose between terrible side effects and status quo, I’m thinking what I’ve got is not as bad as it could be.”
Mom parks in the handicapped spot in the front of the school. I’ve got nowhere else to go with this conversation, so I climb out of the car.
“Ben’s driving you home?” I can tell by the way she’s looking at me she’s just trying to say something to make everything right between us.
“Yeah,” I say.
“Love you,” Mom says, and I look away so I don’t see her eyes—because I can tell by her voice that she’s crying a little.
“For God’s sake, Mom, I love you too. I just want to have a say.”
She nods. I shut the door, a little too hard, which I feel kind of bad about, but not bad enough to walk back my stance. So I make myself move forward. When I get to class, I pull out my phone and text Uncle Steve.
Well, that went well.
You talked to your mom?
Yup.
And?
She cried.
Did she listen?
Not sure. Maybe a little. I think.
Baby steps, niece-y. Baby steps.
I want to tell him I’m too old for baby steps, but the bell rings, and that means that in the next few minutes I’ll get to watch Julian enter my classroom. That knowledge pushes all the bad feelings away.
* * *
12:10 P.M.
Harry Potter or Lord of the Rings?
Um…both?
Hedwig or Dobby?
OMG you’re evil! Who could choose between those two?
You can’t keep saying both! You have to choose.
Ok then, chocolate chip or sugar with sprinkles?
Both.
Smiley face emoji.
Favorite food?
Nah. It’s weird.
Now I have to know.
Soup.
That is weird.
OMG I’m never confiding in you again.
Kidding!!! Who doesn’t love a bowl of Campbell’s Chicken and Stars.
Gross. Also, I’m onto you.
What?
You’re hoping that the type of food I like will give you some clue as to who I am. As in right now you’re probably scanning the room looking for some girl eating soup.
Ha!
Don’t deny it.
I didn’t.
Thirteen
When I get home, Mom’s waiting for me, and I wonder if that’s a good thing or a bad thing.
“Sweetie, sit down.” She pats the couch next to her.
I let my backpack slide off my shoulder and onto the bench where we hang our coats and store our boots. “Sure thing,” I say, but I admit that my mood nose-dives when Dad walks into the room.
Jewish households work this way. You see someone or something out of the ordinary, and you automatically start counting heads. It’s like this: Rena? I just saw her like ten minutes ago as we passed each other. She was heading to rehearsal and stopped to hand me a cookie she’d made in culinary. So she’s probably fine. Eric? Did something happen at his college? Did he fail out? Get hurt? Mom’s not crying so that’s probably not it. All of this goes through my mind, but all I manage is, “Everything okay?”
Dad smiles. “Yes. Everyone’s fine.” He sits in the chair opposite Mom.
Right. So this is about me.
Dad starts, “Mom said we needed to have a little talk.” He holds up his hand in reaction to my balking at the term little. “I mean to say, we need to discuss how you’d like to proceed with the medical…” His hands grope for the words.
“Decisions. I would like to have a say in my medical decisions.”
For Dad, there is always an element of pride when I assert myself. Even when it’s against him. So I’ve got that in my favor.
“Yes. Your medical decisions. And while your mother and I feel that you do have a right to decide what happens to your body, we are worried that you will opt out of some treatment that in the end would be beneficial just because of some short-term pain.”
I try not to answer right away. I try to let his words sink in, but it’s so galling that they believe they should have any say in what happens to my body. I want to text Uncle Steve right then and there. I want to scream at them to speak to my lawyer. I want to shout that I am not shortsighted. I am simply the one these medical experiments are happening to.
Dad looks like he’s going to say something else, but Mom puts her hand up. “Let’s listen to her, David.”
Hot tears spring to my eyes, and I work like mad not to let them fall, but I’m losing the battle. Sad tears, those I can hold back, but angry ones spill without my permission.
Mom turns to face me. “Oh, Jenna.” She slips her arm around my shoulders, and I can hear her crying also.
Dad turns his face away, because one thing he can definitely not deal with is when any of us cry. “What do you want, Jenna?” he says with a softer voice. His I’m trying to be reasonable voice, and that’s when I know I’ve got him. But I don’t want to win because I cried. I don’t want to win because Dad softened. I want to win because I’m strong and I’m right. Mom hands me a tissue—she always seems to have tissues with her—and I wipe my nose and try to sit up straighter.
“It’s not fair for you to decide what’s going to happen to me.” I sniffle. “It’s like I’m an animal or something.”
“We make Eric and Rena get flu shots every year just like we make you. We made Rena get braces, and she didn’t want them,” Dad says.
“I was on Rena’s side when she didn’t want braces. But also, braces are not surgery. Neither are flu shots. If I had cancer…”
“God forbid, Jenna,” Mom blurts.
“God forbid,” I say to make Mom feel better. “But if I did, would you make me do chemo even if the doctors said it wouldn’t change my long-term prognosis?”
“That’s not the same thing at all,” Dad argues. He shakes his head. “Not at all.”
“It
feels the same to me.”
“We know that and we’re sorry.” Mom hands me a brochure while giving Dad a calm down look. “There’s a class being offered at the hospital. It’s all about the pump.”
“We’d like you to take the class,” Dad says.
I nod, processing this development.
“Then you can decide if you want to proceed and when,” Mom adds.
Dad holds up his finger. “But we want a say also. Consider us as silent partners. Investors.”
“The silent part sounds good,” I say.
Dad laughs. “Take the brochure. Sign yourself up for a class. We will put the hospital pretests on hold until you’ve made your decision. But…moving forward, if you get more of a say in your medical decisions, we want more of a say in your academic ones.” He lifts his chin a bit and stares down at me.
I’m feeling fragile when I want to be kick-ass, so I don’t answer him with a smart remark.
“Deal?” Mom asks.
“Deal.” I point to my room. “Am I excused now?”
“Yes, but I’m making kale lasagna for dinner, so you might want to join us for that.”
Low blow. My favorite.
Dad smiles as Mom leaves. “Still friends?” he asks.
“You should’ve been the lawyer instead of your brother.” An old joke.
“I’m thinking that’s a career path you might want to explore,” he says, “which is why you need to go back to the higher-level classes where you belong.”
“I need to get some work done,” I say, my eyes telegraphing my desire to go to my room. I’ve got the brochure they gave me clutched in my hand. I could open it and read it, but I already know what it’ll say: I need to get the pump. I don’t want to hear that right now, just when I’ve finally convinced my parents to let me have some say.
So instead I decide to indulge in one of my dorky guilty pleasures: reading the AP Psych textbook and pretending I’m in that class alongside Ben. According to the online syllabus, they are on unit 4 Sensation and Perception. I could seriously add to some of those class discussions. Part of me feels like trying to hack into them, you know, sort of hang out in the online classroom, but that would make me even more of a weirdo than I already am. It’s not that I can’t do this stuff. It’s just that I don’t want to have to reliably do it. Not when at any moment my muscles could make me a spasmodic example of what happens when the doctor who delivers you goes a little light in the head during the procedure.
Mom, Dad, and Ben think I’m making a big mistake taking these classes that are too easy for me. Are they right? Was I too reactive? I remember when I used to be so sure of things. When I listened to Mom and Dad, mostly before the big dramatic birth-accident reveal.
But that kind of knowledge, the belief that there was a Jenna before and a Jenna after, that kind of thing changes you. Just like the baby who is turned into a crow because her mother can’t bear to have the baby she birthed, just like the swan princess that became something else because others needed her to be human or bird, I am part the thing I was supposed to be and part the one I became. My point is, I have been touched twice. Once by Dr. Jerkoby who jerked his hand as he delivered me, then again when I found out about the birth injury.
Part of me wishes I could go back to before, when I didn’t know. When I stood solidly behind Mom and Dad’s decisions for me.
I pick up one of my snow globes from the shelf above my desk. The ones Mom makes to commemorate family trips and exciting moments. The one I grab is of our last Florida vacation. We were in Boca Raton, Florida, to visit my mother’s aunt Judy. Eight years ago in August.
Eric and Rena went swimming. Body surfing, Eric called it.
It came right when we were planning my surgeries to loosen the muscles in my legs. We’d gone to the doctor to see if we could schedule them, but my growth plates were still open, so we had to put it off. We’d gone straight from the doctor to the airport, practically, and I remember how stunned I’d been. Dad and I had been so sure we’d be able to get it all set up. He’d planned an entire recovery movie list. He’d bought a bunch of board games. He’d notified his work that he needed time off. It was going to be epic.
I’d done some swimming in a pool before, but never in the ocean. Dad would sometimes walk me out to where I could still stand but the waves were a little choppy, but since he was out with Eric and Rena, I was left to hang out in the wet sand with the little kids.
Mom took video of Eric and Rena and Dad. I tried not to get pouty, but it was hard. Dad must have seen me or sensed my mood, or maybe he was feeling the same way. The next thing I knew he strode out of the waves, his hands out in front of him like a zombie.
“Aaaah,” I screamed.
He stopped directly over me and dripped on me on purpose.
“Hey,” I called out. “You’re drowning me!”
“I am?” He laughed, bent down. “You’re made of sugar now and you melt?”
“Maybe,” I said.
He turned to face Eric and Rena, then back to me. “So, want to try that?”
“Are you insane, David?” Mom put the video camera down. “No way. The water is way too rough today.”
Dad ignored her and crouched lower. He turned around and pointed to his back. “Climb on.”
I stared at him. Maybe he was insane. But then I remembered Dad’s face when the doctor said it wasn’t time for the operation. It had looked like he’d been punched in the gut. Dad was not a wait-and-see kind of guy. And I wanted to try something that could distract us, make us both feel better.
As I climbed on Dad’s back, Mom reached for his arm. “Don’t take her in too far.”
Dad turned to face her. There was a moment between them that I didn’t understand. “She’ll be fine, Sharon. She’ll be fine.”
Mom’s hand went to her mouth, but she backed up. Her signal for backing down. Dad turned toward the ocean, and we moved forward. The waves lapped up my legs. It was so much warmer than I thought it would be. Much warmer than the ocean on the Cape. I’m not sure exactly what it was that day that caused the magic. Maybe it was Mom’s worry for me; her constant fear of something happening to me made me want to prove that I was strong and brave and free. Maybe that was the catalyst that triggered my slacking muscles and got them ready to work.
All I know is something happened in the ocean that day. I closed my eyes to keep the salt water out. The sun was so warm on my face, and it made me safe feel. And so strong. I wanted to be free. Something made me want to let go of Dad. So I did.
It worked. I rose above the waves, Dad’s hand reaching for me, but my body moving, bobbing, floating—swimming on its own.
Rena danced through the water next to me. “You’re doing it!”
“Be careful with her, David!” Mom shrieked from the beach.
I used her fear that day, made it propel me forward. It made me try to balance on the water, prove to her that I could do this.
“She’s fine,” Rena yelled back. “She’s like a mermaid.”
I was like a mermaid, only with a little help from Dad, Eric, and Rena to stay afloat. My strong need to beat what was holding me back made me surge forward. I was trapped in this unwieldy body, but my props made me large.
In my room, here and now, I stare at the snow globe. Inside of it, encased in the glass sphere, is the picture that Mom took that day of me being a mermaid. I want that feeling back. The feeling of being fearless, knowing I have my family there to support me. We were always there for each other.
And I believed we always would be. I blow on the snow globe glass. It fogs. I wipe it clean. I breathe on the glass again. Let it fog over. Cover that scene.
The thing is, I don’t want to be trapped in a crystal dome.
My cell pings.
Come see me play tomorrow.
Everyone in the school wi
ll be there. It’s a big one.
I’ll even score a few for you.
As much as I’m enjoying being Julian’s virtual confidant, it’s just like that snow globe—fake. And that’s starting to not be enough anymore.
The game is the start of something called the Connecticut Cup, which happens every year at this time. It’s a big deal for the senior hockey players, since it’s their last hockey season. Hockey isn’t as popular as football in our school, but it’s my favorite sport. We celebrate the start of the Connecticut Cup with a week of dressing up, followed by the game, which is against Danbury High. We play them twice: once at the beginning of the season and once at the end. Whichever team wins the cup at the end of the season wears their hockey jerseys to the Hockey Homecoming Winter Formal, the dance commemorating the end of the Cup.
Eric was so proud to wear his, but Christina, the girl he took, was less than excited about the whole thing. Especially since Eric decided to “do it right” and wear his unwashed jersey, the one he’d worn on the ice to win the cup. Rena and I thought it was funny.
Eric’s coming into town tomorrow night in time for the first big game, which makes this all feel like it’s coming together for some weird reason. Like the universe is conspiring with me. Making magic.
I stare at all of the snow globes Mom made for me. There’s one for my preschool graduation. Me on my hippotherapy horse, Midnight, and one for every first day of school. Lots of me with Eric and Rena. Some of me and Ben.
If I close my eyes, I can almost see my perfect worldview where we could see into the mystical realm and enter the secret garden where every person would have their own Tree of Life. Millions of trees, all filled with these glass globes documenting the best moments of their lives. How beautiful would that be? I tap on one of the globes. It makes the most comforting sound.
Julian said he wanted me to come to his game. I close my eyes and try to picture one of these globes with a picture of me and Julian in it. Now that’s what I’d call magic.
Fourteen
Everyone acts like idiots in school this week. Truth be told, they like any excuse. But this year the hockey team has a hot prospect for the Ivy League, Daniel Beard, so the week leading up to the first game in the Connecticut Cup is bigger than ever. It’s kind of cool. We’ve got “dress up like your favorite sports mascot” day. “Dress up as a rowdy hockey fan” day. And today, game day, is “dress up as a character from Frozen” day, because, you know, why the hell not? My classmates defy the rules and wear hats and gloves and scarves into the classroom.