by Susan Haas
Hannah shook her head. “If we’re gonna do this we should do it all the way. How about Monkey Joe’s?”
“Mon-key Joe’s! Mon-key Joe’s!” Tucker chanted.
I stuck out my tongue. I had seen TV commercials for that place. Kids climbing and laughing on a ginormous blowup playground. Happy, excited faces. Obstacle courses, slides, and bouncy houses.
“I don’t know,” Mom said. “How can that be fun for Lexi?”
Mom! Seriously? I arched hard and groaned.
“We’ll carry her,” Hannah said.
“Yeah!” Tucker said. “We just carried her around the playground for an hour.”
I stuck out my tongue. Please, yes! Please?
Mom stared at me for a long moment. “I’ll look into it when we get home.”
Hannah picked up my hand and high-fived me.
That afternoon Mom wheeled me up to the table with Haha then disappeared into her office.
Tucker touched letters on Haha’s screen then stood back. “Go ahead. Say it.”
I hit the top button and Haha announced, “Tucker’s birthday is first, and he needs ice cream cake and a Super Mario video game.”
“Thanks, Lexi. Do me a favor and keep saying that,” Tucker said.
Hannah reached over and also typed something. “Now say that.”
I moved the cursor to the top. “Tucker’s birthday is first, and he needs deodorant.”
I laughed and hit the button twice more.
Haha had lived up to her name, but after nearly two months of daily practice, the top button was still the only one I could hit every time. My brother and sisters took full advantage and typed in reminders and suggestions for Mom or random insults for each other. I would look at the screen, and Haha would say, “Kasey has a hair appointment at three” or “Hannah is a butthead.”
Mom reappeared in the kitchen. “It’s all set up! We’ll have your party at Monkey Joe’s next Friday. It’s during homeschool hours so it won’t be so crowded.”
I squealed.
“But after my party, right?” Tucker said. “Because my birthday is first.”
“Yes,” said Mom. “It will be after yours. What do you want for your birthday?”
I looked at Haha. “Tucker’s birthday is first, and he needs deodorant.”
CHAPTER 31
Age 13, 12½ hours until surgery
I’m standing with Mom at the top of the hospital play structure, staring down a long yellow slide when I hear two Facebook pings in a row. Please, let it be them. I arch and writhe.
“Lexi! I’m going to drop you if you don’t hold still.”
Dad is stretched out on top of a picnic table. He doesn’t sit up but lifts his arm and waves his phone. “Finish up and we’ll read your messages.”
Mom wrestles me into a sit. Thick, dark clouds have rolled in along with gusty wind. I love how the front side of a summer storm—all wild and swirly—makes me feel like a little kid again. How its rawness urges me to forget everything ahead and just do now. And in this now, Mom and I are both kids.
Mom pulls the tennis ball from her shorts pocket. Gus waits, looking up at us. His tail is wagging.
Mom positions the ball on my lap. I twist and flail until I knock it loose. It bounces down the slide, over Gus, and into the grass.
He leaps after it, catches it in his mouth, then immediately drops it and lies down on top.
Two pigtailed girls laugh and run toward him.
A lady—maybe their mom—grabs them by the arms. “You can’t just run up and pet dogs you don’t know.”
“It’s fine,” Dad says. “They can pet him if they want.”
Gus isn’t wearing his service dog vest, so technically, right now he’s just a dog.
The girls wriggle free and slump beside him, rubbing his back. He lifts his chin and smiles.
“His name is Gus,” Mom says.
Six eyes find the top of the slide and flicker over me. I pump my arms up and down to wave, but by the look on their faces, it must look like I’m attempting to fly.
“What’s wrong with her?” one of the girls asks.
I wait for the stammered apology and clunky retreat. It’s usually quick, like an awkward version of the Five-Second Rule. If you drop food on the floor but pick it up fast, you can still eat it. If you grab your kid and run off before I react, their words don’t hurt. Science, by the way, has disproved the Five-Second Rule.
The lady flushes but at least she doesn’t make a run for it.
“This is Lexi, and she has muscles that work differently from yours,” Mom says.
“Can she walk?”
“With help.”
“I can walk,” one of the girls says. “And run.”
Both girls jump up and demonstrate.
“Not everyone is so lucky,” the lady says. “You should be thankful for your strong legs.”
I want to shout, “I don’t want to be you!”
And it’s true. I don’t want to be them or anyone else. I’m fine with who I am. I like who I am. I mean, I get it that I’m different, but why do people assume I hate being me?
I twist to try and catch Mom’s gaze. Most days, she’ll set the record straight.
Tell them I can be lucky too. That I’m not a worst-case scenario.
But the long day is etched on her face. She gives a weak smile as the lady waves goodbye and chases her girls around the playground.
“Ready?” Mom asks.
She leans back and picks up our feet. We coast to the bottom.
After one more round on the slide, Mom and Dad lift me into my chair. Dad pulls out his phone, and I squeal.
“You have lots of encouraging posts on your last picture. Would you like me to read them to you?”
He’s teasing me again. I make a swipe for his phone, but I’m not even close.
“I suppose you want to hear your messages first.”
I try for a “yeah,” but I’m still out of breath. Instead I stick out my tongue.
“They’re from Anna and Elle,” he says, and I squeal so loud a couple walking by turn to stare.
I don’t care. I flail.
“I’ll let you read these in private.”
He turns the phone, and a message pops up. I will my eyes to focus on each word.
Hi Lex! Woulda messaged u earlier but Mom banned us from the internet for fighting. Totally Anna’s fault. Anyway, miss u. NC is boring without u.
I laugh so hard I can barely breathe. Finally, I recover and point to the phone.
Dad scrolls down to the next message.
NOT my fault. She’s just mad cuz I told Mom she was bingeing HP fanfic when we were told 2 clean our rooms … She’s right about the boring part. Can’t wait till ur back. Did u hang the banner yet?
I laugh hard again, then suddenly, I’m crying. Those two will never change. That’s what I love about them. I remember the day I met them. We were at Ms. Joann’s for our first-ever French class. I was having a “bad body day” as my family used to say. I was twisting and arching, and I bet I looked like a sea creature plucked from the ocean. Mom was having a hard time even holding me.
Elle came right up to me, and do you know what she said? She said, “I like your shoes.”
That was all. They were old pink Chucks with Gryffindor laces.
Then, Anna picked up my foot so she could get a closer look. I don’t know why, but that meant something. Maybe because most kids just looked at me. No one ever touched me.
Mom and Dad are looking at me like I just sprouted a second head. Dad’s phone pings again. This one is the text ping.
“Oh! It’s Steve Shapiro,” Dad says. “He wants to meet us in the hospital chapel at seven.”
“Tonight? It’s nearly six already. We better get dinner first,” says Mom.
I’m not sure what to think. My doctor wants to meet me in the chapel the night before brain surgery. Is this a bad omen?
My scaffolding shifts. I slip a little closer
to the edge. I squeeze my rock.
The wind whips over us. The voice is more insistent. Hurry. Hurry.
Deep breath in. My story. Breath out.
CHAPTER 32
Age 6, The Year of the Buttered Cat
The next week, Tucker had his birthday party at the movies with ice cream cake and a Super Mario Brothers video game. Finally, Friday came. It was my turn.
At Monkey Joe’s, the receptionist showed us to our party room. We had a few minutes before my friends would be there, so Hannah suggested we give the play space a test run.
The inflatables were way bigger than I had imagined. I think they were bigger than Mom had imagined too. She pointed to a purple and yellow slide that towered over us.
“How are you going to get her up there?”
“Like that,” Hannah said. She nodded toward a mural of a monkey wrapped around a coconut tree.
Mom and Tucker draped me over Hannah’s back. They wrapped my legs around her waist then pulled my arms over her shoulders.
“Okay,” Mom said. “Be careful out there.”
We climbed onto the first inflatable.
I took a deep breath. This was it. A real-life adventure. I was … I was … Princess Leia dodging stormtroopers on a speeder bike? No. Harry flying Buckbeak over the Hogwarts lake? No.
I had been so busy hanging out with new friends I hadn’t visited my old ones in weeks. I guess I was a little rusty.
C’mon. Choose … Yes! Got it!
I hummed the Indiana Jones theme song in my head as we squeezed through a forest of soft columns and crawled up and over yellow hills. When Hannah wobbled, I could feel Tucker’s hand pressed on my back. Finally, we reached a purple mountain with a built-in ladder.
Hannah breathed hard. “If we can make it to the top, there’s a slide on the other side. Ready?”
Tongue out.
“Eww, you licked my neck.” She scrunched her shoulders. “Sometimes I wish you could just say yes.”
I stuck out my tongue again, but not to say yes.
We began to climb. Hannah leaned close to the ladder, gripping the side with one hand and squeezing my hands with the other. Tucker’s hand was firm on my back. Part way up we stopped. Hannah leaned in, panting.
I loosened my grip a bit, looked down, and learned something new about myself. I was afraid of heights. My breathing sped up to match Hannah’s. I arched. Tucker pushed harder.
“Lexi, take a deep breath and count to five,” Hannah said.
I breathed in.
One, two, three, four, five.
Nothing.
One, two, three, four, five.
Nothing.
I arched more.
“Lexi! Count something. Anything! Count sheep or pretzels or whatever. Just count!”
I breathed in again, and this time the list I had repeated so many times leaped into my brain:
One, memory.
Two, words.
Three, humor.
Four, I don’t know.
Five, I don’t know.
One, memory.
Two, words.
Three, humor.
Four, I don’t know.
Five, I don’t know.
I don’t know.
I. Don’t. Know.
I don’t know if there is a four or a five …
There. I had said it—or at least thought it.
I think it’s probably common for a rock climber, looking down from a mountain face, to question the most basic truths of her life. For me, clinging to my sister’s back ten feet up an inflatable mountain was gonna have to do.
I buried my face in Hannah’s hair.
What if that’s it? What if there is no four? Or five?
I thought back to Crazy Mr. Bean’s prophecy: “This child will have five gifts. Give or take a few … I can’t be absolutely sure of the number.”
All this time I’ve been looking for more, but what if … what if this is all?
We were moving again. My breaths continued in heaves.
And if there isn’t a four, and there isn’t a five, then … where is my body? Why hasn’t it come?
Hannah rolled onto the top platform. I let go of her neck, and Tucker collapsed beside me. For a long moment, the three of us lay there, panting.
“You know what, Lexi?” Hannah said. “You’re a lot heavier than you look.”
Tucker picked me up so we could see how high we were. Below, Mom paced, then spotted us and waved.
We had made it! Today I would blow out six candles on my cake and make a wish for whatever I wanted. I could wish for more gifts, or for my body to come in, or to ride a hippogriff, and yes! I wanted all of that. But right in that moment, what I wanted more than anything was to always have my friends and family there for me.
“Are you ready to slide down?” Hannah asked.
Tongue out.
Hannah plopped me on to Tucker’s lap. She gave him a push from behind, and we zoomed to the bottom.
Mom picked me up and pointed to the entrance where Anna and Elle and the rest of my friends from French class were waiting.
For the next hour, Hannah and Tucker led us all on more expeditions, with me clinging to Hannah’s back, and then, when she was too tired, to Tucker’s back, until Mom called us into our party room.
Everyone drank juice boxes and sang “Happy Birthday to You” as Mom lit the candles on my cake. She plucked a candle from the middle and held it up.
“Make a wish!” she said.
And I did. Together, we all blew out my candle.
CHAPTER 33
Age 6, The Year of the Buttered Cat
Have you ever tried to leash a cat? Once, when The Cat disappeared, Tucker thought he found him prowling around a neighbor’s yard. We later found out that gray cat lived there, but Tucker didn’t know it. He was sure it was The Cat, and he tried to bring him home by slipping Luke’s leash around his neck. There was scratching and biting (from the cat) as well as earsplitting screeches (from Tucker and the cat). Tucker finally let him go and decided this: You can put a leash around a cat’s neck, make kissy sounds, and bribe him with treats, but if that cat doesn’t want to come with you, that cat isn’t coming with you.
From that day on, when anyone in our family has tried to force something in a direction it doesn’t want to go, we’ve called that “leashing the cat.”
Kali attempting to straighten her thick, curly hair during our North Carolina summers was leashing the cat.
Mom instructing Tucker to sit right side up and finish his math assignments was leashing the cat.
And in the weeks following my birthday party, persuading my brain to think about gifts was also leashing the cat. I had worked so long and hard on my gift search that I just couldn’t go there anymore.
The deadline was still nearly four months away. Plenty of time. Maybe it wouldn’t hurt to take a little break. After all, my third gift had appeared when I was least expecting it.
The freedom was amazing. For the first time in nearly a year I didn’t pick apart each moment like a buzzard on roadkill.
Every morning, I had a rubberneck view of the buttering of The Cat. Dad in his oven mitts held down a wriggling, raging fireball. Mom, the fencer, en garde with her buttered spatula, lunged forward. The Cat blocked jab after jab until Mom faked right, swung left, and landed a greasy hit.
As I watched, I practiced my lightsaber skills at the Jedi Academy or my wand technique at Hogwarts.
I also attended my end-of-school French celebration at the community center of Ms. Joann’s church. Mom wheeled me around the stage while I played the part of a magical tree in our class play. After that, Ms. Joann presented me with a fourth-place ribbon for the National French Exam. Anna and Elle placed too, so Mom and Ms. Trejo took about a million pictures of us with our ribbons. Before we left, there were hugs and promises for lots of summer get-togethers. Avery and Marc even dragged their parents over to hear my Chewbacca impression.
A week
later we had the spring festival at Mitey Riders. My whole family watched as I rode around the rink with my team and received my trophy.
It was during these public events that I discovered one of life’s simple pleasures: goosing people who stood too close to my wheelchair. It started innocently enough. At the end of the French program, everyone had rushed the exit at once. Kasey was pushing my chair, and we found ourselves stuck in a thick crowd.
I told my arms to not move, so obviously they flew out. Each hand grabbed something. That something turned out to be two butts. The owners of those butts jumped and turned to look at me.
Kasey pulled my arms in and apologized. The two people smiled and shuffled out of reach. In no time, two more victims came within striking distance. Out flew the arms.
I discovered that if I timed it just right, my hands could do a quick pinch and release. My victim would look around, then turn back with a confused expression like they had imagined it all. Kasey pretended not to notice, but I heard her make a little laugh-snort. By the time we reached the exit, I’d managed to goose six people.
The following week at the Mitey Riders finale, Mom was pushing my chair. She was so distracted she didn’t even notice what my hands were up to. All in all, I goosed eight people that day, and I was pretty sure no one suspected me.
And so began my career as a bandit butt pincher. I kept a running tally in my head. My goal each day was to add to my total, if not break my Mitey Riders record. It was the first time I could make a reliable, repeatable movement with more than one muscle, and it was fantastic.
At this rate, by fall I could probably learn how to swipe wallets and cell phones. Maybe I’d make the switch from superhero to villain. The possibilities were endless. Yep, my summer of go-with-the-flow was shaping up to be amazing.
CHAPTER 34
Age 13, 11½ hours until surgery
We’re back in the hospital cafeteria. Before me is a feast of macaroni and cheese, green beans, mashed potatoes, a yogurt parfait, and an ice cream sandwich. I don’t know if I can eat it all, but I’m gonna try.