The Year of the Buttered Cat

by Susan Haas

  Hee hee! Blurry flurry. Flurry blurry. Flurrrrrr …

  CHAPTER 51

  Age 13, Recovery, Day 3

  Three days in and the pain is much better. Not gone, but better. I’m sitting up in bed, and Mom is squeezing a juice box into the corner of my mouth. My memory is back, good as ever. Well, except for the ice fishing contest. I can only recall a few filmy images, like I’m underwater looking up to the surface. That’s okay. I’m fine with not remembering that.

  “Good morning, Lexi! You know what today is!”

  I squeal. It’s Brian and his nurse, Jill. They’ve come to turn on my new stimulator. I try to remind myself this is just act two in my three-act play.

  Jill holds the programmer to my belly, and Brian pushes a few buttons.

  DBS programming is complicated. I understand it best if I think of it as controlling a hurricane—a good hurricane. Brian can change things like how much land will be hit, how much rain will fall, and how long the water will stick around afterwards. Only the rain, obviously, is electrical stimulation.

  “It’s on,” he announces. “Lexi, I’m only going to turn it up a little, in case steam comes out of your ears or something.”

  We all laugh but I wish there would be steam—something to see. As it is, it feels like nothing. It all happens in the third act. Yes, the mind-numbingly dull third act is where the ending will unfold. I think about my voice. My story. My evidence.

  I’m suddenly aware of another person standing by my bed.

  “Hi Lexi. I’m Jan, one of the physical therapists. We’re going to try to get you up in a gait trainer and walk around a bit.”

  Gait trainer? Seriously? It’s been three days!

  I screech in protest, but despite my complaints, within a few minutes I’m strapped into this contraption that looks like a walker an old person might use, only with a bunch more straps and supports. It helps me stand up straight and tall.

  I’m taking cautious steps down the hall. Gus is trotting beside me, barking his encouragement and sidling up to anyone who will pet him. Dad doesn’t notice, because he’s recording my every step on his phone. He’s crying a little, and I guess I am too. Because I’m a lot like my dad.

  Maybe it’s all in my head, but I think my steps seem a little easier. That makes me laugh. Of course, it’s all in your head. Obviously.

  CHAPTER 52

  Age 13, Recovery, Day 6

  I can’t believe it’s been nearly a week since surgery. Dad posted that video of me walking in my gait trainer, and more than 4,000 people have watched it. They’re probably thinking what I was thinking. Walking three days after surgery? Seriously?

  Yesterday, Dad had to go back home to North Carolina. He took Gus so that Mom wouldn’t have to take care of both of us. Also, Gus had to get back to his part-time job. And that reminds me, I haven’t finished telling you about The Cat.

  A few years ago, after a long, happy life, Luke passed on peacefully. He was indifferent to The Cat to the very end. When we brought Gus home two years later, The Cat greeted him at the door like he was welcoming an old friend. He figure-eighted his legs, and when Gus lay down, The Cat kneaded his belly.

  Gus, as you probably guessed, does not do indifference. He swiped The Cat in with one paw and licked him top to bottom. Unbuttered. I guess Gus likes his cats plain.

  Ever since, Gus has been moonlighting with The Cat. It gives him something to do when I’m asleep. I can only imagine how happy The Cat was when Dad walked in with Gus this week.

  That’s The Cat’s happily ever after, but mine is just beginning. This place is beginning to get old, but most days Mom has been able to sneak me out. She rolls me up to the Liberty Memorial, and we watch Kansas City life—plain old ordinary Kansas City life—unfold below us. When we roll back in the hospital, Mom stops at the nurses’ station to check for mail. Usually I have a pile of cards from Facebook friends, and Mom tapes them to my wall. It helps cheer my room up.

  Brian and Jill have come by every day to program my stimulator. I still can’t feel much, but here’s the thing. Yesterday, when I raised my arm to feel my buzz cut, I touched my head. With my hand! For the first time ever, I rubbed my head. And today, I even held my head up for a few seconds all on my own. Mad skills, right?

  So far, my voice is no different than before surgery. I can still huff out a few words, but they aren’t any clearer or stronger. That might get better over time, but if I have control of my head and maybe even more than that, I should at least be able to use Haha. And that’s where my voice, my story, my evidence really begins.

  CHAPTER 53

  Age 13, Recovery, Day 7

  Mom is holding up her phone, slowly turning it all the way around my room. She stops and focuses in on the We Love You, Lexi garland over my window.

  “You hung it up!” Elle and Anna both shout from the phone.

  Mom turns the screen back to me. I stick out my tongue and sit up as tall as I can in my wheelchair.

  This is the first time we’ve talked since surgery.

  Before we FaceTimed them, Mom covered up my head with one of the rainbow bandannas they gave me. They admired my fashion statement and filled me in on everything I’ve missed in Charlotte. Which, they promised, is nothing.

  Now, Mom is giving them a tour of my room. When she’s done, we make plans to get together as soon as I get home.

  Just as we’re about to hang up, Elle asks to see my head.

  I take a deep breath, I haven’t even gotten up the courage to look at myself yet, much less share my new look outside of the hospital.

  Elle clasps her hands and gives me a big, cheesy smile. “Pretty please.”

  I laugh then give Mom the thumbs up.

  She carefully removes my bandanna. Elle squeals.

  “Your hair looks amazing like that!”

  “In a few weeks, you’ll look just like Emma Watson when she had her hair short,” Anna says.

  I smile big, even though I knew for sure Emma Watson didn’t have wires bulging in her neck or spots where hair would never grow back.

  Suddenly, five or six -ists file into my room. It’s the daily hospital rounds.

  “Gotta go,” Mom says, waving. “We’ll see you guys in a few days.”

  The head -ist, is a short, freckled, red-haired man. Over the last few days, he’s grown on me. I don’t trust him yet, but I like him. He asks Mom questions and checks out my stitches.

  Before they leave, he turns to Mom, “Someone said they saw you two off property again yesterday.”

  Mom nods. “We went to the Ronald McDonald House for brownies.”

  I love how she doesn’t even try to hide our jailbreak.

  He and the other -ists are shaking their heads even as she nods.

  “You can’t just leave hospital property like that—”

  “It’s a mental health break.”

  Truth. I need a) sun on my cheeks and b) fresh air in my lungs, not this super-scrubbed hospital air. Without those breaks, I’d go bananas.

  “I could say we won’t leave again, but we probably will.”

  Obviously.

  I can tell the redheaded -ist is trying to look stern, but there’s a little smile behind his and-I-mean-it glare. Finally, he sighs. “Well, at least get a pass when you go out so we can find you if we need to.”

  Mom nods. They leave. We fist bump.

  I still have a problem with -ists. How do you build trust after a start like mine? How do you ever put down your guard, climb out of your sinkhole, and let people help?

  It’s tricky, but for me it’s two parts. Both involve the future.

  Part One is finding doctors who are willing to chase answers and push for solutions, even when those answers and solutions don’t exist yet. It starts with finding doctors who will butter the whole cat.

  In fact, I’ve started a list. Okay, I’ll say it—an -ist list. Doctors I Trust. Since I started coming here to Kansas City, my -ist list has grown to a staggering five. My go
al is double digits, but that’s gonna take a while.

  I mean, my brain knows that most doctors are caring and trustworthy and all those things that doctors should be. But my story is not just stuck in my brain. It’s woven into every part of who I am. I don’t think unweaving is possible. Or necessary. I just need to keep weaving new, better stories on top of the old one until that old story fades.

  Then there’s Part Two, and that is all about paying it forward to save the next baby. It’s me, telling my story. After the first surgery and all the publicity, we found our way to other families with familiar stories. Innocent babies, sloppy doctors, unmonitored newborn jaundice, a lifetime of disability. Why hadn’t we heard this before? Why wasn’t it screamed from a balcony or at least a newspaper headline?

  Turns out, it was the legal system. Most of the time, when this happens, there’s a lawsuit. The cases are usually cut and dried and rarely make it to the courtroom. Settlements are reached. Damages are set and along with it, a gag order. A legally binding agreement that families must never, ever tell their story publicly.

  The doctor silences the baby. The legal system silences the rest of the family.

  So, it continues to happen. With no one left to tell the story, it continues to happen, the evidence swept away like inconvenient crumbs.

  Until me. My doctor may have destroyed my medical records but there was one crucial piece of evidence left behind. Me. I am the evidence. Lexi Haas, author, is here to tell her story.

  CHAPTER 54

  Age 13, Recovery, Day 8

  I’m sitting in my wheelchair in the hospital activity room. Three fat spotlights shine down on me with such intensity, I feel naked. There are also cameras and fuzzy microphones on poles and way too many people for this space.

  This was all Steve Shapiro’s idea. Yesterday, Mom and I came back from our daily jailbreak to find him admiring my collection of cards. He didn’t even ask where we had been, even though I’m sure when he hugged us, we smelled of mulch, and catmint, and fresh air.

  He inspected my stitches, then slumped into a chair and smiled. Steve has this certain smile when he has an idea. It’s playful and mischievous, and his eyes light up like a kid planning a candy heist.

  Mom recognized it too, because she said, “Okay, Steve. What are you up to?”

  Steve picked up my room service menu. “Have you tried the chicken nuggets? I hear they’re pretty good.”

  Mom pushed the menu away from his face. “Steve. What’s up?”

  He smiled again then took a deep breath. “I was thinking of getting a news crew out here to do a story about Lexi’s surgery.”

  Mom didn’t say anything, so Steve continued, “It would be good for the community to see what we’re doing here at the hospital, and at the same time, create some awareness about kernicterus. You know … like last time.” He turned to me. “This is only a small local station, but you never know.”

  I swallowed hard. I knew. Local news becomes national news, and before long I’d have even more people watching me. I looked at Mom.

  She smiled and held up her hands. “I’m staying out of it. This is your call.”

  Part of me—a lot of me—wanted to put on another movie, order up some of those chicken nuggets, and call it a day. I wanted to be a regular kid. Was that too much to ask? But that voice in my head would not shut up. Part Two is about paying it forward to save the next baby. It’s me, telling my story.

  Deep breath in. My story. Breath out.

  There’s a long mirror in the activity room. One of the camera guys is covering it with a drop cloth, “To reduce glare,” he explains.

  Before he’s done, I get my first glimpse of myself since surgery. The bright lights spare nothing. I have no idea what Elle found so amazing about this. My hair has grown in enough to look like a dark brown buzz cut. On top are two jagged incisions. My neck bulges with the wires. As predicted, I look like Frankenstein. It’s one thing to frighten children on the street. Am I ready to share this with the whole world?

  I don’t have long to think about it before a producer positions Steve, Brian, Mom, and the reporter around me. Another light flashes on and the cameraman says, “In three, two, one …”

  CHAPTER 55

  Age 13, Recovery, Day 9

  Mom, Steve, and I are hanging out in my room eating chicken nuggets. The local news is blaring from my TV. It’s super boring, but our story is finally supposed to air tonight, and we don’t want to miss it.

  Just before the news is over, the anchor says, almost offhandedly, that they want to show us some cutting-edge procedures going on at the children’s hospital. As he talks, a picture of me flashes on the screen. I wince. Mom squeezes my hand.

  The interview is short. Too short. Personally, I don’t think the reporter has done her job. She doesn’t know anything about DBS and doesn’t even mention kernicterus. She talks to Mom and Steve the most, and Brian explains how the DBS is supposed to help. It seems like I am mostly there for show.

  The reporter doesn’t ask me a single question until the very end. Finally, she turns to me and says, “Lexi, do you have optimism about your future now?”

  I take a deep breath and watch myself squirm in my wheelchair. I admit, she caught me a little off guard. How do you answer that sort of ridiculous, loaded question?

  I never do look at her. Instead, I turn to Steve and smile. I stick out my tongue. He smiles and sticks out his too.

  They cut to a commercial. Mom turns off the TV.

  “Well, that was … interesting,” she finally says. Then she says what I am thinking. “Too bad they used your platform as a promo for the hospital.”

  Steve shrugged. “We just have to keep working away at it. Keep trying to get the message out.” He washes his hands in my sink and pulls paper towels from the dispenser. “Anyway, I wasn’t completely wrong. The chicken nuggets are good.”

  CHAPTER 56

  Age 13, Recovery, Day 10

  It’s now been ten days since surgery and guess what? I’m. Going. Home. Today! Tonight, I will sleep in my own bed with Gus snoring loudly on the floor. And tomorrow, I’ll get to see Anna and Elle in person.

  In the past couple of days, I’ve traded pain for boredom. There’s been too much time for stuff to stew in my head. One thing that I keep going back to is that reporter’s stupid question. “Do you have optimism about your future now?”

  I’ve thought a lot about that word. Optimism. I even had Mom google it.

  op·ti·mism n. hopefulness and confidence about the future or the successful outcome of something.

  Exactly what I expected, but still, my brain gets hung up, crazy enough, on that little n. up front. Noun. I know. I get it. Abstract noun, blah blah blah. I understand that. Obviously.

  But this doesn’t sync with my optimism. This googled version is a stupid, empty meme of hearts and rainbows and perky slogans like, “If you can dream it, you can achieve it!” or “Life is nothing but attitude.”

  I call bull and here’s why.

  In the last few months I’ve known despair that, even in my wheelchair, buckles my knees. Hopelessness so deep, it’s like a stomach that’s never been fed. A heart that’s never been loved. And yeah, a voice that’s never been heard. Still I know, I know I’m an optimist.

  I don’t think optimism is about dancing through life, never witnessing the sinkhole of my fears. Optimism is finding myself in the bottom of that hole and feeling around in the darkness until I find the rope that I know has to be there. It’s about pulling myself up, inch by inch, second by second, until a sliver of light that I know has to be there, flickers above me.

  That’s my optimism. I wish I could go back and tell that reporter that my optimism is an action word. Something I work at, not something I have. And it’s tied up in one big, hot mess with persistence and faith. It’s not always pretty, and it’s not always perfect.

  Mom is scurrying around my room, packing my bag. I hear a familiar voice down the hall.
<
br />   “Lexi, I’m gonna find you!”

  I squeal like I’m five again. My door flings open.

  “You were always terrible at hide-and-seek,” Tucker says.

  After hugs and kisses, Tucker picks up my juice box from my tray and drains it. I arch in protest, and we both laugh.

  “Why don’t you show Tucker around the floor while I finish up?” suggests Mom.

  He rolls me responsibly to the door. When we cross the threshold, he pops a wheelie and races me down the hall.

  After three laps, we roll back in the room, both of us breathless. Mom is gone but my packed bag is on the bed. My garland is neatly folded and resting on an oversized envelope.

  I point to my cookie sheet.

  Tucker picks it up. “This old thing?”

  “Yeah,” I say.

  Tucker shakes his head. “It’s Hannah who’s good at this. Not me.”

  I point again and say, “Eees!”

  He sighs. “I’ll try. But only because you asked nicely.”

  He puts the board in my lap and hunches over me, holding my wrist.

  I spell, What if this doesn’t work?

  I’ve thought it a zillion times, but I haven’t had the courage to say it until now. To get through the last few weeks, I’ve made myself focus on potential, but now that we’re starting act three of my play, the question has become more persistent.

  I think back to that Aha! moment I had while clinging to Hannah’s back at Monkey Joe’s all those years ago: All this time I’ve been looking for more, but what if … what if this is all?

  It’ll be months, maybe years, before we know for sure. I think I have to consider both possibilities.

  Tucker shrugs. “What if? It’s not like it’s the end of the road. It’s not over until you say it’s over. You’re in charge, remember?”