by Susan Haas
Inside, the receptionist gave Mom a clipboard with papers to fill out and told us to have a seat.
Soon after, a dad came in with a boy who looked about Tucker’s age. As the dad hunched over his clipboard, the boy rocked and flapped his hands. The dad reached into a bag, pulled out a carved wooden wand and handed it to his son. The boy stopped rocking, stopped shaking, and rubbed his hand over the wood.
I admired his swish-and-flick technique. He caught me watching and wordlessly cast a spell in my direction.
Oh, it is on.
I was pretty good with nonverbal spells myself. Not only that, I had perfected wandless magic.
I uncurled my finger. Expelliarmus.
Missed. I guess my aim still needed work.
The boy cast three in a row. I ducked, and they all sailed past.
I pointed again. Tarantallegra. The Dancing Feet Spell. If that worked, the boy would be tap dancing into his appointment. I laughed at that picture.
He jumped up. For a second, I thought my spell had hit its mark, but instead of dancing the boy lunged forward. He waved his wand at me. The spell flew over my head and hit the door to the back clinic. Right then, the door opened.
I squealed. Nice use of the Alohomora Charm.
The boy beamed.
“Lexi Haas,” a nurse called.
Mom rolled me towards the door. I tried to wave goodbye but instead my arm flew out, blocking the doorway. Mom folded my arms to my chest and rolled me through.
Inside, the nurse led us to a tiny room where she took my pulse and blood pressure.
“The doctor will be in shortly,” she said, closing the door behind her.
“Oh, I forgot to let Dad know we made it,” Mom said. She pulled out her phone.
She was busy texting when I heard muffled voices outside the room. The door swung open. In swept a smiling man with a graying beard, bright, happy eyes, and a slightly crooked tie—the man from Mom’s computer. The man from my dream.
CHAPTER 43
Age 13, 1 hour until surgery
It’s 5 a.m.—an insane hour, by the way—but I’m dressed and in my chair. While Mom and Dad get ready, I look out the window at night sky and pouring rain. Occasionally, there’s a crack of thunder and a flash reveals the houses across the street.
“I hope this lets up soon,” Dad says, “or I don’t know how we’ll get to the hospital.”
Downstairs, we stand at the front door and stare into the angry morning. Mom is at the front desk, and when she returns, she’s frowning.
“There’s no handicap accessible shuttle, so we’ll have to make a run for it.”
Dad throws up his hands. “How can a hospital not have an accessible shuttle?”
He rests his hands and forehead on the glass doors and stares into the parking lot. I’m certain he’s thinking about grabbing me and making his own run for it—chucking me over his shoulder and Ubering to the airport. Hijacking a plane. Back to North Carolina. Back where the sun is already up, bright and hot. No rain, no storm. Just plain old, familiar North Carolina.
For a hot second, I hope he’ll act on his fear. Take me home. I was wrong. I’m not ready to make this kind of decision!
I take a deep breath and think of my story. My evidence. My voice.
I smack his leg. When he looks at me, I point and smile. “Go!”
“Lexi, it’s storming.”
Ggguuhhh! “Go!”
Dad sighs.
Mom covers me with a plastic trash bag, hands Dad an umbrella, and smiles. “Race ya.”
We dash into the rain with Gus loping beside us and Dad hot on our heels. My wheels whirl through puddles as we cross the street, dash pass the playground, slog up the long hill, then roll through the hospital entrance.
Finally.
Deep breath in. My story. Breath out.
CHAPTER 44
Age 6, The Year of the Buttered Cat
It took a minute to recover from my shock. I had only ever had that one glimpse of this man, that one flash of his picture on a website, but I was sure this was the same guy. He bent down so his eyes met mine.
“Lexi! It’s been a long time since I last saw you! You probably don’t remember me, but I’m Steve Shapiro.”
Last saw me? That prickly feeling had been right. I had been here before.
I tried to say hi and wanted to say much more. All that came were grunts and groans. Dr. Shapiro nodded like he understood. When I finished, he took my hand and rubbed it for a long minute. He stood up and gave Mom a hug.
“It’s great to see you again, Steve,” Mom said.
Steve? She knew this guy well enough to call him by his first name.
Dr. Shapiro smiled. It was so warm, I felt like I knew him too.
I renamed him. Steve.
“We have a lot of catching up to do,” Steve said.
The appointment felt more like a visit with an old friend and, as those kinds of visits usually do, went on much longer than any of us had planned.
I got the usual neurology exam—a check of my reflexes with the rubber hammer and a look into my eyes with a flashlight—but there was also a lot of talking, and for the first time ever in a doctor’s appointment, I paid attention.
I found out I had actually seen Steve three times, but those visits were all when I was a baby. He said he had been busy with research on top of his full clinic schedule and that he wished he had more time to see kids like me.
“What about treatments?” Mom asked. “I’ve been watching the journals and haven’t seen anything new.”
“And you won’t. This is too rare to get much attention from industry. They want to put their money where the numbers are.” He stopped and sighed. “Most advances have come from parents taking matters into their own hands.”
“Exactly.” Mom handed the dog-eared papers to Steve. “Let’s talk about Deep Brain Stimulation.”
He smiled and pushed the papers back. “Susan, you know that’s never been done on any of these kids. We hope to do studies on rats first—”
“And how long will that take? Five years? Ten? In the meantime, her childhood is slipping away. You know as well as I do her best shot at neurological repair is before puberty.”
Mom! Seriously?
“And what does Lexi think about the idea?”
“She doesn’t know much about it yet, but she’s willing to at least find out. So, we should be too.”
Steve looked at me and smiled. “You’re interested in finding out about DBS?”
Tongue out.
“Tell me this, Lexi. How much do you know about your brain injury?”
Brain injury?
I had never heard those words together before. Separately, they were harmless. Together they were Mentos in Diet Coke. The jolt shot from the base of my spine.
My brain injury?
Steve looked at Mom. “Does she even know what happened?”
Mom’s eyes met his then she looked away.
“Susan, she needs to know. Especially if you’re considering something like DBS, but also because it’s an important part of her life that she needs to understand.”
“But she’s six!”
“A very smart six,” Steve said, smiling at me.
Mom nodded slowly.
“I’ll tell you what. I’ll talk with our neurosurgeon and see if she’ll agree to bring Lexi back for more testing. If she thinks DBS might help, we can go from there, but insurance won’t pay for it until Lexi turns seven, so we have time to gather opinions.”
Mom folded the papers and nodded.
“In the meantime,” he said, turning to me, “ask your Mom about jaundice. She has some things she needs to tell you so you completely understand.”
Jaundice. Brain injury. DBS. The words swam together in my head.
Outside, Mom and I waited quietly for the valet to bring the van around. We drove to the hotel in silence. Not angry silence. Thinking silence.
This is it. The last car ride before
I know. The last everything before I know. Do I want to know?
Mom rolled me into our room, flipped on the lights, and heaved our suitcase and cooler onto the bed. She bent over my chair and kissed me.
The last kiss.
“It’s been a really long day. What can I do for you? Are you hungry or thirsty?”
Ggguuhhh. No more lasts! I have to know!
I stared at the suitcase.
Mom unzipped it, reached in, and held up my pajamas.
Ggguuhhh.
My teddy bear.
Ggguuhhh.
Finally, she held up my cookie sheet. I stuck out my tongue and arched my back.
She sighed. “Can we wait until tomorrow? We’re both really tired.”
GGGUUHHH.
Mom stared into my eyes for a long second, then pulled me onto her lap.
I reached for the board and pulled down letters.
“Jaundice,” she read. She took a deep breath. “Do you know what it means?”
Ggguuhhh.
I want to know … I think … Do I? I can’t go back and unknow.
I didn’t spell that. I couldn’t give her an open door.
“There are actually two definitions. There’s medical jaundice, like Steve was talking about, but jaundiced also means bitter and resentful. The first one has a lot to do with you, but the second one isn’t you at all. Lexi Haas, you are an enigma.”
I reached for my board and pulled down more letters.
What’s that?
“An enigma? It’s something we can’t easily explain.”
Like my crazy body?
Mom nodded. I wrote some more.
And Virginia Dare?
“That’s a good one. A historical enigma.”
And buttered cats?
She laughed.
My mom has never had the luxury of watching me play outside, picking dandelions, and running, arms outstretched, to see the wind carry the seeds. Or of watching me chase fireflies as evening creeps in, wrapped in the sweet smell of warm earth and summer jasmine, and knowing she should call me in, that it’s getting much too late. But I imagine that this was how she felt, watching my twisted, writhing body as I chased words instead of fireflies.
Finally, I knew it was time to go inside and that Mom wouldn’t call me in. I reached forward and rapped my fist next to the first word I had written.
Jaundice.
I pulled down more letters.
Tell me.
Mom breathed in, as if savoring the last breath of warm, earthy air. “Okay. I think it’s time you heard the whole story.”
CHAPTER 45
Age 6, The Year of the Buttered Cat
Mom pushed aside my cookie sheet and gathered me in her lap like she did when I was little. She studied my eyes like a mother meeting her new baby for the first time. I knew she was thinking back to that April day when I was born.
“It was clear right from the beginning you were coming here with your own agenda. Dad was working out of town on weekdays. He was on his way home when I went into labor three weeks early. Once you decided it was time to be born, there was no stopping you.
“You made your appearance twenty-one minutes after we got to the hospital—barely long enough to get into a birthing room. Your first moments weren’t pretty, though. Your breathing was fast and light. The nurses whisked you off to the newborn nursery for oxygen.
“My arms ached from the emptiness. I wanted to hold you so badly, but instead of cuddling you in our room, Dad and I stood by the nursery window and waved at you, kicking and screaming under an oxygen tent. You had a huge, swollen bruise on your forehead, a souvenir from your fast exit. When Dad called home to tell the kids you were here, he joked that their new sister looked like an angry drunk in a bar brawl.”
I laughed hard, and my arms and legs went wild.
Mom waited for me to calm, then continued. “By nighttime, you were still in the newborn nursery. Dad went home to be with the other kids. I was getting ready for bed when a nurse came in to say you were a little jaundiced—or yellow—probably because of the bruise and that they would put you under some special lights to help clear it up.
“The next morning, Dad brought the kids to meet you. By then you were breathing fine and had given up the fight for a long, deep sleep—so deep you didn’t even wake up to nurse.
“The doctor phoned in to tell the nurses to discharge you. He told us to bring you to his office in three days for a checkup. That’s when Tucker wheeled you NASCAR-style toward the exit until a nurse revoked his license.
“Over the next three days, I don’t think your head ever hit your crib because your siblings were all fighting over who would hold you. Dad had to go back to work in Chapel Hill. He didn’t want to leave, but I told him that you were so easy, we would be fine. By Monday, I could barely wake you to nurse, and your skin had turned a deep yellow-bronze.
“That afternoon, I took you in for your checkup. By then I was worried. I told your doctor, ‘She sleeps around the clock! And look at her skin, she looks like she’s been on a beach vacation!’
“He laughed and told me I was just an overanxious mom. He said I didn’t need to worry about the jaundice, that it would eventually go away.
“And he was right, the jaundice did clear up, but it took nearly three weeks.” She stopped for a minute and sighed. “Are you sure you want to hear all this tonight? We can finish tomorrow.”
Ggguuhhh.
I was exhausted, but I had never been more awake than I was at that moment.
Mom swallowed hard and continued. “Well, your early struggles seemed behind us, and we settled into the chaos of a family of seven. But after a few months, we noticed you weren’t reaching out to touch things or trying to roll over. Also, you went from sleeping all of the time to sleeping none of the time. Dad and I had to tag team sleep just to get a couple of hours of rest each night.
“Your doctor finally agreed that something didn’t seem right. He sent you to a neurologist, but she didn’t know what was going on, either. At that point, I took matters into my own hands. I got a copy of your medical records and dragged you and your brother and sisters to every children’s hospital within a day’s drive.
“We saw all sorts of specialists who ordered dozens of tests, but no one could tell me what was going on. Our medical bills were adding up along with the stress. Work suffered, because we were so focused on finding out what was happening with our sweet baby. We lost our house and cars and moved to North Carolina, but I pressed on, searching for answers that I knew had to be there.
“At night, when you and I were the only ones still awake, I pored over your medical records and searched the internet, hoping to find anything that made sense, anything that could pull it all together.
“One night, I was staring at the doctor’s notes from your first days, and something struck me. All his notes were typed, except for the ones from that first appointment. For the first time, I wondered if your records had been changed. I tried to reconstruct that visit, moment by moment in my head. What did we talk about? What did he want to cover up?
“Finally, it came to me. Jaundice. You had been really jaundiced, but there was nothing about it in his notes. There was nothing about it in the hospital records. I went back to my computer and searched some more, until one night I found Steve’s website. Suddenly, it all made sense. You had been poisoned.”
I nearly arched out of Mom’s arms.
Poisoned? Who would poison a baby? Did you call the police? Were they arrested?
Now I understood why Mom had leaned over the porch railing and vomited that night. My stomach lurched.
Mom put a hand on my chest and waited for my body to relax. “Let me explain. Lots of new babies have jaundice. It’s caused by bilirubin, which is made by your body. Most of the time it’s harmless. But if the doctor isn’t careful …” Her voice turned squeaky, and she trailed off.
Don’t stop! I flailed, hitting her in the ribs.
She squeezed me and cleared her throat. “If the doctor isn’t careful and lets the bilirubin get too high or lets it go on for too long, it can get into the baby’s brain and poison certain areas. Once these areas are damaged, they can’t be fixed. The baby is left with a condition called kernicterus.”
She went on to say that people with kernicterus can have cerebral palsy or deafness or both and that while my hearing was spared, a part of my brain that controls movement was not.
I heard this part, but I was stuck on what she said before that. Once these areas are damaged, they can’t be fixed.
Those words settled over me. I knew they wanted to seep into me, to become a part of me. I had to keep them out.
I stared into Mom’s eyes, pleading with her.
No! That’s not true! My body is coming! I’ll catch up! I just need to find one more gift, and it will be here! It’s coming! Right? It’s coming!
I needed to hear the words. She had to say the words. Don’t worry. You’ll catch up. She didn’t know I had been searching for gifts for a year, or for my body for a lifetime. But it didn’t matter because I could see the answer right there in her eyes.
I couldn’t keep the words out any longer. Once these areas are damaged, they can’t be fixed.
And just like that, Lexi Haas, the person I thought I knew, began to dissolve. Bits and pieces pixelated then vanished into nothingness. Fingers and hands, then toes and feet.
This was not how this was supposed to end. I needed a different ending! Please, let there be a different ending!
They say people who are about to die see their lives flash before their eyes. But in that moment, what I saw was the life I was supposed to have. Little slices of ordinary that should have been mine.
I was riding a sparkly blue bicycle, knees scratched, and my face twisted with concentration. Dad was jogging hunched over beside me as he held my seat. He whispered, “You can do it! You’re doing it!” He faded behind me as I peddled off on my own. Strands of sweaty hair whipped across my face.
Then I saw myself a little older, sitting—or half sitting—in Ms. Joann’s class. I was nearly leaping from my seat, my hand punching the air as I cried out, “Choisissez-moi! Choisissezmoi!” until Ms. Joann chose me to answer her question.
