He is solid and constant. The moon and the stars.
I would do anything for this boy, and I’d have done it sooner if I could, but I had to wait until I turned eighteen a couple months ago to see if I was a match. Sometimes I wonder if the reverse is true—if Peter would do anything for me. Deep in my bones I know that if Peter were healthy, if my kidneys had failed instead of his, he would. He’s just never had a chance to prove it like I have.
I unzip my backpack and spread a blanket over the ground. “I wanted to give you something,” I say as we sit down. “Before the surgery.”
“You’re already giving me something kind of huge.”
“Fine, something you can actually hold.” Making my face super serious, I pull Operation out of my backpack.
He bursts out laughing. I adore Peter’s laugh. It’s like your favorite song played on repeat. “Stop. You’re the best. You’re already the best, and then you do this? There isn’t even a word for what you are.”
His words swim through my veins and try to convince my heart he feels what I feel.
“Fantastic, brilliant, wonderful, perfect.”
“All of those. You are all the adjectives. You and your big brain.” Every so often, that joke pops back up.
Beautiful, intriguing, irresistible—those, too? I don’t say.
We scoot closer to each other on the blanket, Peter’s thigh against my thigh, Peter’s hip against my hip. My entire left side hums with electricity, but I’m careful not to press myself into him the way I want to. I am constantly pretending that Peter touching me is not the most incredible feeling in the world. I’ve trained my breath not to catch in my throat, willed my heart to slow down. I am more aware of my body when I’m with him than when I’m onstage.
“Why are you doing this, Soph?” he asks, idly brushing a thumb across my knee, a gesture that nearly splits me open on the forest floor.
He’s asked this question so many times. A voluntary surgery like this is no small thing. The only thing in my life that comes close, four stubborn baby teeth when I was eleven, can’t exactly compare.
I’ve gotten so used to sick Peter that I wonder what a healthier Peter will be like. He won’t be on dialysis anymore. He won’t sleep so much, eat so little, throw up the small amount of food he’s able to get down. He won’t hurt.
“You are my best friend and favorite person,” I say. “And you really, really need to start wearing jeans again.”
He doesn’t laugh. “Are you scared?” He whispers it, though we are the only people around. Like he wants to keep our conversation a secret from the trees and sky. He reaches over and squeezes my hand.
“Yes,” I say simply, squeezing back. I can’t be dishonest with him, not about this. Even though there is no way I’m changing my mind, I’m terrified of what will happen when I am unconscious. When they cut me open and put part of me into Peter.
On the blanket, my phone lights up with a message from my dad.
Where are you? Luna’s party starts at 6.
It’s five till. “I completely spaced,” I say with a groan, smacking my forehead. “It’s Luna’s birthday.”
“Wait. Before you go.” He reaches over and pulls up the hem of my sweatshirt. His hand fumbles between the sweatshirt and my tank top for a second, like he’s searching for where, exactly, the kidney I’m giving him is located, and then he strokes my back. Slowly I exhale. Through the thin cotton fabric, his fingers are warm.
There are a thousand other reasons I’m doing this, but still, this gesture makes me think what I have only allowed myself to think about on the rarest occasions: that maybe, after the transplant, Peter will want me, too.
“Don’t worry, Soph,” he says, replacing my nerves with something even scarier. “I’ll take good care of it.”
CHAPTER 2
PETER
WE CAN SEE SOPHIE’S HOUSE out our kitchen window, so it’s almost like her family’s having dinner with mine.
“A lot of cars over there,” my mom muses, aiming her fork at the window.
“Her sister’s having a thing,” I say to my plate.
“A Thing, you say?” my dad says in the most dadlike way. He could open up a school to train fathers-to-be in the art of bad jokes and gentle sarcasm, but his sense of humor suits him as a dentist, too. “That explains it! I’ve heard Things are very popular these days. Especially with the young people.”
Years ago, my family would’ve been invited to the party Sophie forgot about. But somewhere in between hospital visits and mortgage payments and Sophie’s younger sister’s pregnancy, our parents slipped away from each other. What initially brought them together—proximity and religion, my dad being Jewish along with both of Sophie’s parents—was no longer enough. They keep to their separate homes, pinballing Sophie and me back and forth between them.
“How was your day, Peter?” my mom asks. A community college writing professor, she’s always been tremendously empathetic, more sensitive than my dad. If I was having an especially difficult day, she’d hold a hand to her heart like it caused her physical pain too. For the past ten years, she’s been working on a novel. I’m not sure she dreams of publication, necessarily—she just wants to finish it. After dinner, like she does every night, she’ll retreat to the couch with a glass of wine, her laptop, and a furrow between her brows.
“Not bad.” I spear a hunk of stuffed eggplant. On our fridge is a list of kidney-friendly foods. “One more paper due tonight, and then I’m free for the summer—well, after the recovery period.”
“Overprotective” doesn’t even begin to describe Benjamin K. Rosenthal, DDS, and Holly Porter. Until I begged her to stop last year, my mom tracked the times of all my exchanges on a spreadsheet. Strict bedtimes, which I never questioned because I was always exhausted anyway. No long vacations, which meant no travel beyond the state’s borders. No driver’s ed. No driving with Sophie until she had her license a full year and was accident-free. I wasn’t even allowed to take the city bus until last year because what if an infection stunned my body the exact moment I sat down, as infections are known to do? No trips anywhere they didn’t approve first, which didn’t make sense because how was I supposed to get there if I couldn’t drive, take the bus, or ride with Sophie? Shockingly, I didn’t own a bike, either.
My parents trade a look, and after several seconds that send me into only a mild panic, they make some kind of silent agreement to allow my mom to speak first.
She stretches across the table to cover my hand with hers. Her nails are pale blue and filed into claws. It’s the one luxury she allows herself: a different color and design each month. “Baby, we’re all crossing our fingers for the best. But we don’t want you to be devastated if we don’t get the outcome we’re hoping for.”
“I—I know.” The reality wraps its cold fingers around me. There are never any guarantees. Sophie’s kidney could fail. My body could reject it. I know all the risks, everything from infection to death.
But, God, it could also be a whole new life for me.
My mom smiles tightly, thinly. We all have sparkling teeth; my dad has us go to the dentist every four months instead of the typical six. “We have to be cautiously optimistic.”
Those words could define my entire life. A new expression appeared on my parents’ faces after Sophie and I went through all the tests, and they’re wearing it tonight. Extreme hopefulness tempered by realism, like they won’t give in to joy because there’s always a chance something could go wrong.
We’ve been through it before—when the major thing that could go wrong, did. I had one transplant when I was five, from a nonliving donor, but my body rejected the kidney. That failure made it a thousand times harder to find another match. Made it something of a miracle that the perfect person was living across the street from me this whole time.
I came to terms with my life, however short it might end up being, a long time ago, after periods of both anger and depression that I worked on with a therapist
. There was dialysis. Constant fatigue. Doctor’s appointments. Blue pills and pink pills and green pills, pills so large I worried they’d never slide down my esophagus. Iron pills after I developed anemia. Pills I choked down when I couldn’t eat anything else, pills that made me even sicker with side effects.
Sometimes I wonder if Sophie’s parents wish she’d latched on to a healthier friend. Someone whose idea of a wild Friday night involved more than a Star Wars marathon and the weird salad my dad used to make all the time, a combination of foods good for the kidneys: cabbage and red bell pepper and cranberries and garlic, drizzled with olive oil. Sophie claimed to love it, but I wonder if she said so just to make me feel better about it. Especially when it gave us both garlic breath.
Truthfully, Sophie with garlic breath could never bother me.
“You promise you’ll check Mark’s water every day while I’m in the hospital?” I ask my parents. “And you’ll give him a dust bath at least twice a week?”
“We raised a teenage boy,” my mom says. “I’m pretty sure we can handle a chinchilla.”
“Though it’s hard to tell who’s hairier,” my dad dad-jokes.
My mom laughs and I groan, but the moment of levity won’t last long. In our family, it never does.
Apparently, I’m a medical marvel. I was born with renal dysplasia, which means one of my kidneys wasn’t working. Sometimes the normal kidney can do the work of both kidneys, the same way someone healthy can live with one kidney. But my working kidney wasn’t normal. I should have died before I was born.
My condition progressed to chronic kidney disease before I even started kindergarten. A kid suffering from an old-person illness. Doctors explained to me in the most basic terms how kidneys functioned: like little trash collectors that removed waste and extra water from the blood, which was then sent to the bladder as urine. After my good kidney and then my first donor kidney failed, I went back on dialysis. The kind of dialysis most people are familiar with involves being hooked up to a machine for hours at a time, multiple times a week. But I hated going in for it. Being surrounded by machines only made me feel sicker. I was surviving—but not actually living.
Now I’m on peritoneal dialysis. A few years ago, a surgeon placed a soft tube called a catheter in my belly, and I do “exchanges” five times a day. I pour dialysis solution into a bag that flows through the catheter. The solution soaks up extra fluid and waste, and after a few hours, I drain it and begin the process again. Each exchange takes about fifteen minutes. At the beginning, my parents did it for me, but as I got older and my body fell into a prolonged awkward stage, I grew embarrassed. A milestone in any young boy’s life: learning to clean his catheter site.
You can still have a normal life, all my doctors said. But some days it felt impossible. I played baseball for a year, but I missed too many practices and the coach was too freaked by my condition to let me play in the games, even after my mom yelled at him. Instead, I lifted weights to keep up my strength. Dialysis was supposed to be painless, but sometimes it made me nauseous and stole my appetite. Food could taste metallic. Occasionally my legs would swell. If I didn’t get twelve hours of sleep, I couldn’t function.
My parents kept me on a tight leash after an infection landed me in the hospital the summer after sixth grade. They suggested homeschooling. It made sense, and I was too tired to fight it.
The transplant list never sounded entirely real to me. As a kid who read too many fantasy novels, I imagined an actual list scribbled on parchment. A wizard who used a quill to cross off names would get to mine and twirl his mustache. “Peter Rosenthal-Porter? I don’t think so,” he’d say, and move on to the next name. He was like the Dumbledore of organ donation.
Until we learned Sophie was a match, I’d given up hope that I’d get lucky twice.
Sophie and dialysis have been the two constants in my life. We performed for our families and for ourselves as the Terrible Twosome. She told me stories when I was bored and made up games for us to play, new worlds for us to live in. Sometimes she just sat next to me and watched movies. So many goddamn movies. On days I couldn’t stay awake, she took naps next to me, her body warm against mine.
I liked waking up when she was still asleep, her chest rising and falling with her steady breaths.
Later that evening my mom buries herself in what must be the twelfth revision of chapter eight hundred of her book and my dad scrolls through Netflix, spending an inordinate amount of time deciding what to add to his queue. I’m down the hall in my room, in the middle of my post-dinner exchange. It’s then that I’m struck with a sudden thought: After the transplant, I won’t have to do this anymore. All these medical supplies, which make my room feel more like a hospital than I’d like, will be gone, a revelation that nearly chokes me up.
If it’s successful.
I shake that thought away. No pessimism. Not after all these years on the list when a match was right across the street.
Optimism only, I remind myself. Okay. I allow myself to imagine September. While I like homeschooling, I’ve thought about returning to school for a while, and summer will give both Sophie and me enough time to recover before school starts. Mainly, homeschooling was just . . . easier. Easier not to explain my exchanges and unusual diet, bodily functions most people find embarrassing, my entire medical history when someone asked what they thought was an innocuous, curious question. At North Seattle High, I can be an entirely new person.
After I finish the exchange and clean up, I thumb through my record collection. Normally I’d put on my headphones and play keyboard, but I’m exhausted and still have to submit that final paper. When I realized I didn’t only have to play classics on piano, I started learning as much modern, piano-centric music as I could: Rufus Wainwright, Ben Folds, Regina Spektor. I put on Soviet Kitsch, one of Regina’s older albums, filled with clunky piano melodies and irreverent lyrics. Years ago I started writing my own music, which at first borrowed chord progressions from my favorite songs before I endeavored to create something of my very own.
When Sophie and I played together, sometimes she offered suggestions. “Try going lower on that part, instead of higher?” or “Can you slow down the beginning?” There was something about our collaboration, about watching her move to my music, that messed with the tempo of my heart.
My parents tend to go all out for my birthdays: baby grand piano, keyboard, top-of-the-line speaker system. I got a vintage record player off eBay when I turned fifteen. And then there’s Mark.
For the longest time, I wanted a sister or brother. When I was nine and my parents made it clear a sibling wasn’t going to happen, they said I could have a pet instead.
“Anything I want?” I asked.
“Anything you want,” my dad said.
“Except for a dog,” my mom added quickly, because we all knew who’d end up walking a dog. So we went to the pet store that weekend, and I picked Mark.
He’s nocturnal, so he’s waking up now. Chinchillas can’t get wet—they come from desert climates and their fur can be slow to dry—so they take dust baths to get clean. Mark gets really into it, rolling and flopping around. Sophie and I used to film videos and put them on YouTube for all our literal dozens of subscribers.
I get what my parents were trying to do. They wanted my home to make me happy—not just because they felt sorry for me, but because they wanted me to have a reason to stay here. If I had everything I could possibly want in my house, I’d never want to leave and risk one of those freak accidents they were always worrying about.
I accepted it. It was easy to curl up in here with Sophie and hide away. Easy to get complacent.
I dump dust into Mark’s dust house, unlatch his cage, and reach a hand in.
“Hey, you,” I say to him now. His tiny black nose twitches, and I bury my fingers in his soft fur. “I’m going to miss you when I’m in the hospital. I want to think that you’re going to miss me too, but . . . that might be giving you too much credit.”
I pull him out of the cage, holding him against my chest before I let him into the dust bath and he loses his little mind.
Then I do what I always do when I’m lonely and Sophie isn’t here: I message her.
How’s the party?
She sends back a picture of herself in a party hat, a finger drawn across her throat. As usual, her hair is spilling out of its ponytail. She’s always wanted to grow it long, but she’s never had the patience. So many times I’ve stopped short of telling her I like it the length it is. That I always like her hair, whether it’s damp from the shower or untamed in the morning or curling softly onto her shoulders.
But I’ve never been very good at giving Sophie compliments, and even if I did, I worry she’d laugh them off. Assume I was just being nice.
That good? I write back.
I stare at my phone for two, four, eight minutes, until it becomes apparent she’s gotten wrapped up in party festivities. Sighing, I drop the phone onto the bed and flop backward, frustrated for more than a few reasons. At the top of the list is my complete inability to articulate my feelings to Sophie. The one and only time I tried, it was disastrous.
Sometimes I feel so utterly trapped by these four walls, by this house. I’ve never done anything to lose my parents’ trust. It was my body that betrayed them. My illness isn’t what’s prevented me from fully participating—it’s everything that goes along with it, my overprotective parents and my perpetual exhaustion and how easy it was to say thank you for the flat-screen TV instead of “Could I take driver’s ed next semester?”
No matter how much stuff I have, I’m almost always alone in here.
Complacency.
It’s suffocating.
Sometimes my body feels more like a medical experiment than something that belongs to me. If the transplant isn’t successful—I let the thought back in for a moment—well, I’ve already lived that life. But if everything goes smoothly . . .
Optimism. I imagine myself back at school, taking AP courses and playing piano in band. Sitting next to Sophie in class, if we’re lucky enough to have any together. Parties on the weekend. Making other friends who could hang out with me here when Sophie’s not answering her phone.
Our Year of Maybe Page 2