by Susan Haas
CHAPTER 19
Age 13, 15½ hours until surgery
The National World War I Museum and Memorial sits high on a hill overlooking Kansas City. It’s one of my favorite places. In front, there’s a long, flat lawn with the Liberty Memorial rising from one end like a limestone exclamation mark. It reminds me of the mall in Washington, DC. Beyond the monument, there’s an overlook with an amazing view. I point to that when we arrive at the park.
We roll from the lawn, past the Liberty Memorial, and up to the courtyard wall. Mom stands me up to see the skyline.
It’s weird, but there’s something about this view that makes me feel grounded, rooted to the earth. I think it’s because here, you see not only the whole city, but the wholeness of the city.
Just below us is one-hundred-year-old Union Station, with ginormous arched windows and crisscrossing train tracks. In the distance is the modern, curvy Kauffman Center for the Performing Arts. There are other icons too, and you can see them all from right here. But life in this city is more than icons. Neighborhoods, schools, and parks are wedged in too, and those little slices of ordinary are what I love. In those little pockets, lives roll along, unaware of me, my problems, my drama. I lean against the wall and soak up all that ordinary, and my mind settles.
The first time Mom brought me up here was this past spring, after Brian called us into his office to show me my MRI. That day, he pulled up pictures of my brain on his computer. He pointed out different areas with his pen, like a tour guide at a museum. The brain part looked like cauliflower or a half a walnut, depending on the view, but in all the pictures, the wires from the first surgery stood out like two glow-inthe-dark snakes.
Finally, Brian rested his pen on a tiny dark spot near one of the wires.
“I’m guessing no one has noticed this spot before, probably because it didn’t cause any real damage,” he said. “It had to have happened when her first leads were placed.”
“Wait! Back up,” Mom said. “What is that? What happened?”
Brian looked up from the computer. “This spot is a brain lesion. These pictures suggest that during her first surgery six years ago, Lexi had a stroke.”
With that memory I arch hard, and I’m brought back to the courtyard. Mom struggles to keep me upright. Dad grabs my arm, and they guide me back into my chair. The wind whips over me, and even in the July sun, I shiver.
We roll down the path to the front of the museum, where a massive frieze overlooks two fountains and the sloping North Lawn.
“‘These have dared bear the torches of sacrifice and service …’” Dad reads, but my mind wanders back to that spring afternoon in Brian’s office.
The stroke had been minor, he told us, and didn’t do any serious damage—at least not to my brain.
It did a number to my psyche. It opened that sinkhole beneath my feet. It was the beginning of my fear. After all, that first surgery when I was seven had been at a first-rate hospital. The surgeon was world-renowned. The surgical team was thorough and careful. None of that mattered. I still had a stroke.
Bad things only happen with bad doctors in sloppy hospitals, right? Right? The question echoed in that sinkhole as I slipped closer to the edge.
I asked Mom to tell me about strokes. She told me that mine was a fluke and was unlikely to happen again. She warned me that reading about them might make me feel worse instead of better. I didn’t care. I wanted to shine a flashlight down my sinkhole.
She read me information from the internet. I learned that strokes happen when the supply of blood to the brain is interrupted. There are a couple of kinds: the kind older people get and the kind unlucky people get. Mine was the unlucky kind.
“Severe strokes kill, but even minor ones can cause lasting problems. They can cause difficulties with balance and speech,” Mom read.
Ha! I get the last laugh there!
“If the stroke occurs in the temporal lobe, the patient can experience memory loss, which can be severe and permanent.”
Memory loss? Severe and permanent?
I pointed frantically to my spelling board. Mom held my wrist, and I wrote: Temporal lobe. Show me!
She pulled up a diagram of a brain on her computer and focused in on a blob at the bottom of the skull. It looked like a wad of discarded gum.
My eyes flickered over the blob. I willed them to focus on the structures inside.
The labels! Go to the labels, I commanded them.
Hippocampus, I read. My eyes broke free and darted to the left.
I corralled them back. Amygdala.
They tried to dart off again, but I locked them down and focused on an egg-shaped structure near the top of the temporal lobe. The word came into focus.
Thalamus. The exact destination for the ice fishing contest my brain would be hosting a few months later.
When I read that, I toppled into the sinkhole, barely grasping the edge.
I was okay with the risk of gaining little—even nothing—from this surgery. I was even okay with losing skills I had never mastered. But losing my memory?
My breathing was ragged and shallow. How can the universe be that … that unfair? I had already lost so much. I had fought back despite the heartache. And this, this was my consolation? Was it a dealbreaker?
Nearly every day since, I’ve asked myself that question. Is it a dealbreaker? Each day, a new answer. Some days I’m strong and ready to charge into the future. Other days, I remember my first ever glimpse of the Atlantic, or the thrill of hide-and-seek, or Anna pressing that rock into my hand. And maybe worst of all, I think of my story, my evidence. Then I am weak.
I haven’t told my parents about my second thoughts because if they knew, it would be over. They would feed into my worries. Even though they would say it was up to me, my decision could never be completely independent of their fears.
The wind gusts, misting us with water from the fountain. Gus jumps in and out of the spray like a little kid in a lawn sprinkler. Mom laughs, and we roll back up the path toward the museum entrance.
We stop for a moment at the Walk of Honor, a path of granite bricks bearing the names of servicemen and women.
An old man in a faded army cap is placing carnations on some of the bricks. When we roll past, he puts a red carnation on my lap. I extend a shaky hand and attempt a salute. He extends a shaky hand and salutes back.
I take in a deep breath. My story. Breath out.
CHAPTER 20
Age 5, The Year of the Buttered Cat
For the next several weeks, a battle raged in my brain. On one side were the fragmented memories of my past and the questions from the Renaissance Festival. Why is she like that? What happened to her?
On the other side was my Epic Reasoning Fail. It had strong roots, and it wasn’t going down without a fight. My body was still coming. It was.
The holiday season came and with it, a ceasefire. Thoughts of missing things, the robbery, and my past were shoved aside for tree decorating, Christmas carols, and most of all, the promise of Santa.
A few days before Christmas, when I sat on Mom’s lap to spell, she had a surprise.
“Today, we’re going write a letter to Santa and deliver it to him at the mall. That way, when he asks what you want for Christmas, you’ll be ready. You can spell it on your board, then I’ll write it on this.”
She held up a piece of stationary with a border of holly and Christmas gifts.
“Do you know what you want Santa to bring?”
Ggguuhhh.
“Do you want a minute to think about it?”
Tongue out.
“Lexi!” Tucker called from the kitchen. “Santa in his sleigh, Harry on his Firebolt, and the Flash. Three laps. Who wins?”
Um, the Flash. Obviously.
Mom sighed. “I need to get him back on track. You think about it. I’ll be back.”
If it’s only three laps, Harry would be second—
“Lexi,” Mom added, “think about what you want Santa t
o bring. Got it?”
How does she always know?
What to ask Santa for felt like a big decision. I had never played with the usual stuff like games and dolls.
I tried to concentrate but was distracted by The Cat, who was halfway up our Christmas tree staring down at Luke.
Luke had completely lost interest in him again. I wondered if The Cat could write, would he ask Santa for a love potion that lasted longer than butter? Did Santa bring that kind of gift? Ones that couldn’t be wrapped?
That was it! I could ask Santa to help with my gifts. He was numero uno in the gift-giving world. If he couldn’t help, no one could.
That afternoon, Mom drove me to the outlet mall. She loaded me in my chair in the parking lot. I had barely used the chair since that day at the farm, probably because I had thrown such a god-awful fit in it. But I guess Mom wasn’t up for Christmas week at the mall with a squirming kid in her arms. We rolled through the crush of shoppers, the letter crumpled in my fist.
Finally, I saw the tree towering over the crowd. A ginormous line snaked around the base. Mom rolled me to the back then held my head so I could see the decorations. Humongous presents rested on a blanket of felt snow. Two plastic elves stood on ladders, waving mechanically as “Santa Claus Is Comin’ to Town” crackled over speakers.
The line inched forward. As my imagination heated up, my arms began to tingle.
Welcome to the Charlotte Motor Speedway and the first annual Speederrr Cuuulassic. In lane one, the big guy himself, Santaaaa Claus. In lane two, Mr. Magic, Harrrry Potter. And in lane three, the one, the only, the FuuuLASH!
I pump my arms. The crowd goes bananas.
The announcer holds the starting gun to the sky. “Runners and umm … fliers … Take your marks!”
BOOM!
Harry and Santa take off. I plop down on the starting line and retie my shoes. Twice. The crowd buzzes. I stretch and comb my hair.
Someone yells, “Whatcha waitin’ for, Flash? Christmas?”
The crowd roars. I break into a jog, then I’m a streak of red.
I pass Harry and the old guy once, twice, three times then BAM! Cross the finish line.
The crowd chants, “Flash! Flash! Flash!”
“Lexi, look! There he is!”
What? Santa? Where?
I squealed so loud the entire line turned around, but when Mom turned my chair for me to see, my arms flopped. This Santa was a fake. Obviously. He had red painted cheeks and a glittery beard.
A man and woman were trying to bribe a wailing toddler onto his lap. Santa waited, slumped on his king-sized throne. And was that gum he was chewing?
Santa coughed and glanced at his watch. A lady dressed as an elf scurried from behind the counter. She jingled a stuffed reindeer in the boy’s face, and he screamed even louder.
When the family moved to the checkout area, the elf-lady waved us in.
Santa looked me over. “So … what’s her deal?”
“Excuse me?” Mom positioned herself between me and Santa.
Santa pointed a single, gloved finger at me. “What’s up with her?”
For a hot second, I was back at the Renaissance Fair, flailing and sweaty, the little girl pointing at me and demanding, “What’s wrong with her?”
I wanted to leave, needed to get out of there. But my letter! I had to get my letter to Santa. Even though this wasn’t the real Santa, it was my only hope to get him my message.
Mom’s fingers trembled as she rebuckled my seat harness.
Ggguuhhh.
She looked at me. My eyes pleaded with hers.
“Are you sure? Him?”
Tongue out.
“Okay. But do you want to sit in his lap?”
Ggguuhhh.
She wheeled me closer. “Lexi has a letter she wrote Santa,” she said, glaring.
Santa sat up straight, and I think swallowed his gum.
The elf-lady jingled the stuffed reindeer and said, “Let’s get that picture! Are we buying the full package or—”
“We won’t be buying pictures,” Mom interrupted. “Lexi just wants to give Santa her letter.”
She extended my arm.
Santa pried the letter from my hand.
“Read it,” said Mom.
He cleared his throat. “‘Dear Santa, I want you to bring me a gift. Love, Lexi.’ Well, of course Santa will bring you a gift. How about a nice doll?”
Ggguuhhh!
Mom shook her head.
“Or something else.” He looked at Mom and she nodded. “I’m sure Santa will think of something else. So, umm … Merry Christmas and be good!”
As Mom wheeled me toward the exit, I heard Santa say, “Doreen, hold the line. I need a smoke.”
Mom mumbled, “I guess that’s the Santa you get at the outlet mall.”
CHAPTER 21
Age 5, The Year of the Buttered Cat
I wasn’t sure how Santa would help with my gift situation, so I wasn’t disappointed when the only gifts I found under the tree Christmas morning were actual gifts—a pair of Clone Wars Nerf blasters, the final Harry Potter book on CD, and an expansion pack of plastic letters with punctuation.
Kali said self-discovery is done privately, I reminded myself. If Santa was gonna help, it wouldn’t be obvious. He would be subtle, maybe even a little sneaky. I had to pay attention.
The week between Christmas and New Year’s turned cold and rainy. With Kali’s help, I battled Tucker with my Nerf blasters. I listened to my new book and played around with the punctuation for my plastic letters. My favorites were the quotation marks. They were tiny but powerful. Two of them could corral an entire sentence or paragraph, like tiny sheepdogs on a cattle ranch.
One afternoon, when Hannah sat down to spell with me, I discovered they were also the most entertaining members of the punctuation family.
Hannah: “What do you want to do now?”
Me: “What do you want to do now?”
Hannah: “Let’s play Hangman.”
Me: “Let’s play Hangman.”
Hannah: “Are you copying me?”
Me: “Are you copying me?”
Hannah: “Stop it.”
Me: “Stop it.”
Hannah pushed away the cookie sheet. “I will spell with you under one condition.”
I liked the pajamas-till-noon pace of the holidays, but by January, I was ready for school. On the first day of French, Mom decided I should finally try using my wheelchair in class.
My classmates admired the sparkly blue paint and took turns wheeling me around the room. Even Avery and Marc spun me in circles. When I got dizzy and let out one of my high-pitched ggguuhhhs, the boys stared in amazement.
“Whoa, Lexi! You sound just like Chewbacca!” Marc said.
Ms. Joann pulled out a bin of construction paper and markers and told us to make decorations for my wheels. Then she, Mom and Ms. Trejo went in the kitchen to drink tea. It was weird because all the kids were speaking English on that side of the red line.
At first, Anna tried to fix it by saying, “Non, non, non! Parlez en français!” but no one listened. She finally gave up and started talking in English too.
After a while, the grown-ups came back into the classroom, and Ms. Joann shuffled through papers on her desk.
Just before class started, Ms. Trejo put a hand on Mom’s shoulder. “How about if the girls and I bring dinner over tonight?”
“No, no,” Mom said, waving her hands. “Please don’t go out of your way.”
“It’s not! I roasted a chicken, but Dean’s been called out of town. Now it’s just me and the girls. It’ll help me to mess up your kitchen.”
Mom laughed. “I guess I can’t say no to that!”
We were gonna have guests? At our house? I wasn’t sure how I felt about that. I mean I liked the Trejos and all, but at my house? It was sorta like the time I saw Ms. Joann in Target. Different worlds—each thriving on their own—should be kept separate. Otherwise, it’s a
ll awkward and stuff.
Ms. Joann told us all to take our seats. Avery pointed out I had already taken mine, and we all laughed. Ms. Joann said her prayers for us just like she always did, but today, she also said one for Mom. And, yeah, that was super weird because she wasn’t even a student or anything.
We finally got down to French. Today we were studying lettres muettes, or silent letters. Ms. Joann explained that some letters are not pronounced at the end of French words; they are silent, or muet, and today we would be learning about five of these letters.
“Répétez, s’il vous plaît: Muet S, muet D, muet T, muet X, muet P.”
The class recited her list and, in my head, I did too.
Then, for emphasis, she had us repeat it in English. “Silent S, silent D, silent T, silent X, silent P.”
I caught Mom’s eye and shuffled in my wheelchair.
“What?” she whispered.
I shifted my eyes toward the bathroom.
“Do you have to go?”
Tongue out.
Mom wheeled me to the bathroom. She wrestled me through the door and onto the toilet seat. After several minutes she sighed. “Lexi, are you going or not?”
I had already gone and was waiting for her help with the, umm … finale. I uncurled a finger and pointed to the tissue roll.
“Oh, sorry,” said Mom. She reached for the tissue. “I didn’t hear anything.”
The words sprang into my head and I guess found the trap door. Without thinking, I arched my back and hissed them out. “Silent pee!”
The shock of that joke coming from my mouth must have been too much for Mom. She toppled backwards, and in a flash, we were on the floor, my legs tangled in hers. Mom was still clutching the end of the tissue. A long piece had unwound and was coiled around my arms.
For a hot second, we lay there completely silent like we had been tased or something. Then Mom started to giggle, which got me going, and all that laughing did nothing for getting us up off that floor.
Finally, there was a knock on the door.
“Is everything okay in there?” asked Ms. Joann.
“We’re fine,” Mom said, struggling to her feet. Then she whispered, “Lexi, you have the greatest sense of humor!”