by Susan Haas
This is the last solid food I’ll have for days. Mom and Dad didn’t blink at my food choices.
This whole day has hinged on lasts. My last play time with Gus. Last coast down the slide. After my last meal, I’ll brush my teeth, and Mom will put me in bed for the last time.
All day, I’ve built a wall, brick by brick, one last event at a time. It’s a wall between before and after. On the other side lies the rest of my life. A life with talking, singing, and shouting? Or a life where I struggle to remember who I am or where I’ve been?
At that thought, my appetite vanishes.
“Lexi, you have to eat,” Mom says. “You know this is the last chance you’ll have for … for a while.”
Mom and Dad have tried hard not to talk about lasts. I wonder if their before and after looks different from mine. From the worry etched on their faces all day, I think it does. Suddenly, I’m overcome with shame for putting them through this again.
I’m sorry. I can’t think of anything more meaningful or soothing.
What I really want right now is a good cry, but instead I open my mouth and eat. For Mom. As if a few bites of mac ‘n’ cheese can make up for all this.
Finally, Dad puts our trays on the service line, and we head to the hospital chapel.
Mom rolls me inside, and my breath catches a little. This is not what I was expecting. The chapel is two stories, paneled top to bottom in pale wood. One side is dominated by a screen carved with a pattern that looks like waves or pebbles or maybe waves of pebbles.
Despite the storm clouds outside, ceiling-to-floor windows flood the chapel with the sort of light that makes me feel like I’m standing in a field. Beyond the glass, I see a ceramic fountain and a garden in full bloom.
But it’s the music that really takes my breath away. Someone is playing my favorite Beatles song—“Blackbird”—on a baby grand piano, and the thick, rich chords bring the room to life. I sing along in my head.
The music stops and Steve rises at the piano bench. He’s wearing cargo shorts and Birkenstocks. “You made it!”
Mom and Dad are spinning slowly, like two little kids. They don’t answer.
“Pretty cool, isn’t it?” he asks.
“Gorgeous,” Mom answers. “I’ve never seen a hospital chapel like this.”
Truth. The whole place is bright and hopeful—so different from the tiny dark chapels we’ve rolled past in other hospitals. And I do mean rolled past. We’ve never, ever wanted to go inside one of those. Mom always says they feel like death, waiting.
Steve hands Dad a guitar. “I borrowed it from the chaplain. Probably needs tuning.”
Dad plucks strings and turns pegs. I realize it’s the first time I’ve seen him smile—really smile—since morning. He pulls up a chair next to the piano, and when the music starts, the room springs back to life.
Mom sees me tapping a finger. She takes me from my wheelchair, and right there in the hospital chapel, I dance. Gus jumps up and tries to dance too. We all laugh.
We move from Beatles to John Coltrane to Thelonious Monk. When Mom can’t hold me on my feet any longer, we lie on our backs and watch the lights that hang from the arched ceiling like individual stars.
“Thanks, Steve. That’s exactly what we needed tonight,” Dad says as he puts the guitar back in its case.
“We have different hats to wear tomorrow, and it’ll be a long day,” Steve says.
I want to drink in all this happiness and contentment and hopefulness so I can remember it later. Remember it tomorrow.
We roll back out into the noise and fluorescent lights, and the good vibes start to leak out of me. I close my eyes to trap them inside.
Deep breath in. My story. Breath out.
CHAPTER 35
Age 6, The Year of the Buttered Cat
That year, summer burst into Charlotte like the fire-breathing dragon from the vaults at Gringotts. I cooled off at the pool, listened to books, and played loads of Hangman, Mad Libs, and hide-and-seek. But it was the three things I didn’t do that defined my summer.
I didn’t search for gifts.
I didn’t find any gifts.
I didn’t hang out with Anna and Elle. Not even once.
And here’s the crazy thing: even though I could feel my deadline closing in, could hear that ticking clock growing louder and louder, the one that bothered me the most was number three.
Mom said that sometimes summers are just like that—you get out of your old routine and into a new one. Things get busy. You forget.
Well, maybe Mom forgot. Maybe Ms. Trejo forgot. I never forgot. Obviously.
The thing about summer is that absolutely nothing can happen for days or even weeks, then bam! Everything happens all in one day.
Monday, July 28, turned out to be one of those bam! days.
I should back up. It actually started the night before. Mom had said that our loaner period was up and that we had to return Haha to the Center on Monday.
Dad took her from her spot at the kitchen table and packed her in a box with a bubble wrap blanket.
He taped the box shut and said, “I’m gonna miss this one, but she’s a loaner so she has to go back.” Then, like a light-bulb had just clicked on in his brain, he added, “And she’ll also enjoy some me-time in her box tonight.”
Everyone groaned. I was spelling with Mom, so I reached for my letters.
DAD! That’s loner. No A.
Dad smacked his forehead.
Mom said, “So, the big question is, do you want Celeste to order you one of your own? One for keeps?”
I pushed letters around on my board but didn’t answer.
The crazy thing was, I was gonna miss Haha too. She had been an important part of some awesome games and pranks. She had totally lived up to her name. But I still hated computerized speech with a burning passion. The first day I set eyes on Haha at the Center, I had made a list in my head of all the reasons why I hated her. Those hadn’t changed.
I wanted a real voice, one with tone and inflections—a voice that sounded like me, not like a computer.
I wanted a voice that didn’t take forever to say what I wanted.
Most of all, I wanted to talk the way everyone else on the planet was talking. Was that too much to ask?
But right then, I really didn’t want to hear that answer. Instead, I spelled, What kind of underwear does Spider-Man wear?
Dad said, “Definitely tighty whiteys.”
Tucker said, “None! He goes commando.”
Mom took my hint and didn’t say anything.
So, bam! day, Monday, July 28, started with me sitting in my car seat and Haha the loaner, or loner, resting in her box on the front seat.
I didn’t want to look at her or think about her. Instead, I stared at one of my stickers that had started to peel away from the ceiling. It had a pink heart in the middle that said, Be Mine. I practiced my telepathy.
C’mon. Fall off. You know you want to. If you fall, Tucker will sit on you, and you’ll stick to his butt.
The sticker curled in the midsummer humidity. I thought of Tucker walking around with Be Mine stuck to his shorts.
That’s it. A little more. You can do it.
Mom braked for a light. The sticker fluttered to the seat beside me. I squealed. My first telepathic success.
“What’s up, Buttercup?” Celeste asked as we rolled in at the Center.
I uncurled my index finger.
“Is that my device in there?”
Tongue out.
“Your mom says you aren’t sure if you want one. Is that right?”
Tongue out.
Celeste pulled up a chair and sat next to me. “I have a surprise. Do you want to know what it is?”
She didn’t wait for my answer. She picked up a letter from her desk.
“Dear Ms. Helling, Thank you for your recent nomination of Lexi Haas for the North Carolina Assistive Technology Award of Excellence. As you know, this award recognizes an individual for
their accomplishments in the use of assistive technology. We’re delighted to inform you that Ms. Haas has been selected as the winner of this year’s award, which will be presented at our annual conference next month.”
Celeste looked up and smiled. I stared at her, waiting for the punchline. No one in their right mind would give me an award for accomplishments in assistive technology.
Instead, she continued to read. “Please inform Ms. Haas she’s been selected so she can prepare a short acceptance speech.”
I arched and grimaced. This was crazy. Why wasn’t Mom objecting? She knew this was a joke.
“Hold up, Buttercup. It’s not like you have to write a Gettysburg Address. Two or three sentences will be fine. If you want, you can just write it on your cookie sheet. We can decide about the device later.”
I frowned.
“Now don’t get too excited. I think you may be the youngest person ever to win.”
On the ride home, I stared at the bare spot on the ceiling where Be Mine had been stuck. The outline was still visible, probably because it had been stuck to that same spot for over three years.
I remembered the day when the dental hygienist held it out and said, “This was for being such a sweet, helpful girl today during your cleaning!”
Mom had quietly accepted my reward. She added it to my collection when we got to the van, but the truth was, I had bit the dentist during my exam. Twice. I hadn’t done it on purpose, but even at three years old, I knew “sweet” and “helpful” were not the words that were going into my chart that day.
And next to the empty spot was Dora the Explorer shouting, “Hola!” I got that one last year at the orthopedist’s office even though I had kicked the radiology technician right between his legs during my hip X-rays. Again, unintentional, but did I mention it was right between his legs? The receptionist presented me with the sticker and told me how cooperative I had been.
And above my window was the Hulk sticker from the pediatrician. That day I had whacked a needle from the nurse’s hand every time he got within poking distance.
Yeah, that one was intentional.
I sighed. I wanted a real award. It felt so good claiming my French ribbon because I knew I had earned it. That’s the kind of recognition I wanted.
“Guess who’s receiving the Award of Excellence at the assistive technology conference next month?” Mom asked as she rolled me into the house.
“Me!” Tucker stood on the coffee table and raised his arms in victory.
Hannah pushed him, and he fell backwards onto the couch.
“Is an ‘assistive technology conference’ really a thing?” Kasey called from the kitchen.
I laughed. Mom stiffened.
“Lexi was chosen for this award, and we should be really happy for her. In fact …” She paused. “In fact, we’re going out to dinner tonight to celebrate.”
That got everyone’s attention.
“That sounds great! How about Mexican, Lexi?” Kali asked.
Mom cleared her throat.
“That’s great about the award,” Kali added.
“She’s even giving an acceptance speech,” Mom said.
“That’s cool! Do you know what you’re gonna say?” asked Hannah.
Ggguuhhh. I arched and grimaced.
“Cool your jets, Lex,” Kali said. “Words are your thing. I’m sure this speech will practically write itself.”
“And you don’t even have to write it on the device,” said Mom. “You can spell it on your cookie sheet, and we’ll type it into Haha for the ceremony.”
I sighed. This whole thing was a sham. Honored for accomplishments in assistive technology, but someone else would type my speech into the device. Geez. Still, I knew there was no way I was getting out of this.
The rest of the afternoon I tried to think of what I might say, but it was leashing the cat. I had never had trouble putting words together before, but now all I could think of was, “I’m sure this speech will practically write itself.”
Mom put me on my bed to rest. The midafternoon sun glinted off my Mitey Riders trophy. My participation trophy.
My celebration dinner at El Paso turned out to be just the distraction I needed. The thick, noisy crowd was the perfect setup for a heist, and from my wheelchair I stole butt pinches like a pro.
Midway through dinner, I looked around the restaurant, soaking up music and clatter and bustle. Back in the far corner, something caught my eye. I leaned towards it, staring. Could it really be? I leaned more. It was! Anna and Elle and all the kids from French class were here eating dinner. Together. Without me.
Elle shot a spitball through her straw at McRae, who laughed and slapped her arm. The others were all there too—even Avery and Marc. All of them were laughing. Having fun. Without me. Why hadn’t they invited me?
As soon as I asked, the answer popped in my head. Sides. Sometimes it’s hard to be on the other side too.
I knew how it was—everyone who could walk, everyone who could talk, everyone who could everything on one side. Me on the other. Yeah? Well, it didn’t look that hard to be on the other side. I watched Anna lean in and whisper to Martine.
Suddenly, I wanted to go. Needed to get out of there. I screeched and arched.
“Lexi, what’s wrong with you?” Mom asked. “Everyone’s still eating.”
What’s wrong with you? The question stung like an unexpected slap. I started to cry.
“Lexi, I’m sorry. I didn’t mean—”
She hugged me until I quieted.
She looked around the restaurant. Her expression turned cold.
“Oh … I see. Well, I’m going over to say hi. At least let them know we saw them.”
Ggguuhhh. My eyes pleaded with her.
“No? Are you sure?”
Tongue out. Sometimes, moms only make things worse. I just wanted to go.
“Lexi’s hot so I’m gonna take her outside,” Mom said. “Just meet us by the van when you’re done.”
We wheeled around the parking lot, watching the last bit of sun drop behind the skyline. When my French class friends came out, laughing and punching each other, Mom rolled me around to the other side of the building.
“Oh, look at these. Hybrid Tea Roses!”
We rolled up to a hedge of creamy lavender flowers. She plucked one and breathed in deep, then held it under my nose. It was fresh and delicate and so familiar. Images of our garden in Virginia popped into my head—Mom, with me on her hip, standing in front of a bush that looked exactly like this one.
“Some of my favorite flowers,” she said. “When we lived in Virginia, I grew five different kinds. Boy, did I have to baby them—the feeding, the pruning! And in winter I’d be out in the freezing cold covering them up, so they wouldn’t die back to the ground. By spring, I’d swear that I was done with them, that I’d plant something easier. Then the branches would suddenly green up. By summer, these blossoms would pop, and you could smell them a mile away. I’d come in from the garden with my hands ripped to pieces from the thorns, but I couldn’t help myself.”
She took another deep breath.
I smiled. Mom hardly ever talked about Virginia anymore. I wanted to hear more. Tell me about the garden. And the swing set. And … all of it.
“There you are!” Dad called to us. “We’ve been looking all over for you.”
“We’re just admiring the flowers,” Mom said.
Dad hugged her and she swallowed hard. We walked back toward the van.
“This was a lot better than the last time we went out to eat,” Tucker said. “Remember Crazy Mr. Bean?”
Hannah laughed. “I forgot all about that!”
In all the commotion of the day, I had forgotten too. July 28. My five-gift prophecy had been exactly one year ago.
I thought back to the excitement and anticipation I had felt in that parking lot. The prophecy had been a promise of a future I wanted so badly to understand, but instead it had brought more questions than answers
. A full year later, I still didn’t know what my gifts were, when my body was coming in, or why it was all taking so long. And to top it off, now I had no friends.
I have no body and nobody.
CHAPTER 36
Age 6, The Year of the Buttered Cat
We drove home from El Paso in silence. Dad pulled into our driveway, and Mom gasped.
“What?” Dad asked.
“Look!”
She pointed to a shadowy area of our front yard. A streetlamp cast soft light over three enormous cats surrounding a smaller, gray figure. That center figure was puffed up and hissing.
“Territory fight!” Kali jumped from the van and ran toward the fight, but two of the cats turned toward her and hissed. She backed away. “Get a broom or something!”
Mom opened the back door, and Luke flew past her. He ran toward the brawl, growling and barking. The three cats bolted for the woods.
The Cat figure-eighted Luke’s legs and purred. Luke sniffed him then barked twice as if to say, “And stay out!”
He trotted to the house, The Cat close behind.
Inside, everyone was talking at once.
“Where did those cats come from?”
“They were huge!”
“I’ve never seen them around here before.”
Dad looked at Mom. “You haven’t been—”
“Of course not! What kind of cat café do you think I’m running here?’
I laughed, picturing a sign hanging at our front door. Cat ears buttered here daily.
“What do you mean by cat café?” Kasey asked.
Mom sighed. She and Dad told the whole story of the buttered cat.
Hannah and Kasey stared at them, hands over mouths.
“So, this cat buttering craziness has to stop,” Kali said. “Luke must be imprinting his scent on The Cat, and it’s seriously pissing off the neighborhood. Plus, all that fat is bad for Luke. It can give him pancreatitis, you know.”
Dad took a deep breath and nodded slowly. Mom sat down at the table, covered her face, and began to cry.
“I’m so confused!” Tucker said. “You hate cats!”
Dad put his arm around Mom. “This has nothing to do with cats.”