“Maybe Lucy will be captain,” says Roma, looking out the window at Lucy’s house.
“If you’re the captain it’ll be like you’re married,” says Whitney.
Jaimes starts to laugh. “Oh my gosh, I totally didn’t make the connection. Golden, you want to be captain? Do you even know what that means?”
“Your arrogance will be your demise,” I hiss.
“Jaimes,” Mom says. “Be kind.”
“Anyway,” I say loudly. “I’m voting for Benny. Captain bands are just a way to… help my team.”
“Uh-huh. Live in that dream world for a while,” Jaimes says.
“Ow!” Jaimes registers my kick under the table, but no one else does, since I keep a very positive look on my face.
“I like the armband idea,” Dad says as Mom patiently dabs his mouth with a thin paper napkin. “Golden’s right. An armband signifies responsibility to teammates. It takes a special kid to pull captain off.” I feel my hands get clammy, my breath quicken.
“With great power great responsibility comes,” Jaimes says in a Yoda voice.
This prompts me to make my best Wookiee noise. I’m pretty good at it and it always makes Mom laugh. This time is no exception.
That’s when I go in for the kill. “Pack of three. Eleven bucks—steal of a deal!”
Ten minutes later, Mom clicks buy and confirm.
Ten thousand points for me.
The Day I Don’t Let Benny in the House
I’m sorry, Benny. And I mean it. For everything.
—GOLDEN
Less than a week later, and two weeks before preseason, two packages arrive at our doorstep.
I run up to my room with them, slamming the door behind me. They’re here, just in time.
I stare at the boxes, relishing the moment—until my door creaks open and I turn around to find four brown eyes staring at me through the crack. I also hear a meow.
You’d think that because I’m the only boy I’d have privacy or at least my own room. But oh no, Jaimes moved in this summer because her new room in the basement isn’t finished and I was feeling charitable since the Squirrels were driving her nuts in their room. But I must’ve been the one who’s nuts. Now even when Jaimes isn’t around, the Squirrels are always busting in, wiggling and rolling and chattering with food in their mouths.
“Presents!” Whitney singsongs.
“We saw you run up here with them. Can I open one?” Roma says, pushing the door wide. In her arms she’s holding Curtis Meowfield.
“No cats!”
“Shh!” Roma says. “You’ll hurt Curtis’s feelings.”
But it’s too late because Curtis jumps out of Roma’s arms and onto my bed. He curls up on my pillow, his tail lazily swishing. Honestly. His yellow eyes stare at me, cool and impassive. I go between loathing Curtis Meowfield and admiring his unflappable boldness.
“Sit,” I tell my sisters. “You can stay, but I’m opening them.”
Miraculously, Roma and Whitney sit in unison.
“It’s no big deal,” I say, taking the scissors and slicing down the clear tape of the first box, which is slightly heavier than the second.
“I think it’s a big deal,” says Whitney. “What if you were voted captain?”
“Then I’d die a happy death,” I say dramatically.
Roma looks horrified.
“Kidding, Squirrel,” I say. “It’s a joke. I’m not going to be captain or die.”
“Is Dad going to die?”
“What? No!”
“Everyone will die someday,” Whitney says, patting Roma’s arm.
“But we won’t for a long time. Including Dad,” I say firmly, opening the cardboard flaps.
“Oooooh…,” Roma breathes, forgetting death.
“Hurry,” Whitney whispers as I look inside, but my stomach plummets.
“Wrong box,” I say quickly. “Just a boring book for Mom about… broccoli.” A cold fear tries to paralyze me when I look again at the book that’s actually inside. But I won’t let it! I toss the box away from the Squirrels.
The second box thankfully does contain the armbands. They look just like the picture, except now they’re real: red-and-white-striped elastic bands that perfectly match our uniforms, the word “Captain” printed in black across the middle of a white stripe. They’re so beautiful I can almost forget what I saw.
“Whoa,” the Squirrels say reverently as I lift them out, fingering the thin plastic covering around them.
I can’t help myself.
I unwrap a band and carefully slide it up my arm and turn to look in the mirror. When I flex, the “Captain” letters stretch slightly, like my very small bicep was meant to wear this band—just like Messi.
“Can I try it on?” Roma asks.
“No. Only captains.”
“But you’re not captain.”
I ignore this. “Do I look like Messi?”
Roma suddenly grabs the other armband and runs downstairs.
“Mom, armbands are here!” I say, chasing Roma into the living room with Whitney and Curtis Meowfield hot on my heels.
I stop short upon seeing a woman in scrubs in the living room with Mom and Dad.
“This is Verity,” Mom says. “She’s a nurse. Dad’s having a home appointment today.”
Verity the nurse smiles and tells Dad, “Hold my hands and don’t let me pull you forward.”
They tug back and forth until he’s up.
Mom told us a nurse would start coming to the house eventually, but she didn’t say it was happening now.
Seven months ago Dad asked me to clip his toenails. I was really bad at it. Dad bled all over the rug and said he’d take his pedicures from Roma in the future.
Six months ago Dad needed help lifting my bike into the back of his truck.
Five months ago he didn’t kick the soccer ball back to me in the kitchen.
And then four months ago, Dad said, “Hey, can you reach the cereal boxes?”
I thought it was weird since he was, like, standing in front of the cupboards.
“Okay, lazybones,” I said. But when I saw his face I realized he wasn’t being lazy. He just couldn’t raise his right arm like he could the day before.
A week after that he couldn’t lift his left arm above his head, either.
But we’ve been working hard on all that. I guess we need to take it up a notch.
“Dad,” I say. “We need to lift more weights.”
“Maybe not,” Verity says, and I instantly dislike her. “Any trouble walking?”
“A little.”
“Lick your lips counterclockwise.… Good. Do you notice any drooling?”
Drooling?!
I snatch the armband from Roma and wander away to look blindly in the refrigerator. I hear Verity express surprise that Dad still plans on working this fall (ha!). She also tells Dad that he should consider “banking his voice” in an audio recording for his children.
“For me?” Roma asks, pleased.
“Yes,” Verity says. “To tell you all the things he loves about you and wants you to know—and so that you’ll always be able to hear his voice.”
“Will Dad not be able to talk soon?” Whitney asks.
“Ah, you know Mom says I talk too much anyway,” Dad says.
I peek around the fridge door. Dad is sticking his tongue out at Whitney.
“Let me show you something else you can help your dad practice,” Verity says. “When it’s too hard to talk, Dad can blink once for yes and twice for no. Do you want to try it?” Roma and Whitney start blinking fast at each other, giggling.
I’m about to tell her we’re not going to need to talk in blinks, but a knock on the door stops me.
I open it, then immediately slam it back shut.
“Hello?” a voice says. “Golden?”
“Hey, Benny!” I squeak.
I open the door again, step onto the porch, and quickly pull it shut behind me.
“Hey
,” Benny says. “What’s up…?” His eyes go wide as he zeroes in on the armband around my bicep.
“They came today! I was just trying it on.…”
“Sick,” Benny says, touching it. He holds up a bag.
“Dumplings?” I breathe. “Bless you.”
“And egg rolls. From Grandma Ho.”
I fist-pump the air. “Yes! I’m so hungry I’ve almost eaten Curtis a few times.”
Benny laughs and looks behind me expectantly. “Can I come in?”
Trouble walking? Lick your lips? Drooling?
“Uh… can’t right now.”
Benny moves to the window to look in, but I jump in front of him.
“A nurse is visiting Dad.”
Benny looks alarmed. “Is he okay?”
“Oh yeah! But the rest of the house is a mess and… maybe next week?”
I mean, it’s true. The house is a mess.
“I used to practically live here,” he says. “I know what your house looks like messy.”
“Yeah.” I nod but don’t open the door.
“Okay,” he says slowly. “Want to play soccer… or Wiffle ball… or ride bikes to the lake? We haven’t been all summer.”
“Uh, I wish, but… my tire is still flat. Next time. Thanks for the food.”
We stand awkwardly on the porch until he finally turns to walk away. As I open the door again, I almost change my mind. But then I hear the nurse ask, “Any trouble swallowing?”
So instead I just shout, “Bye, Benny! You’ll be wearing the armband soon! I’m voting for you!”
He holds up his hand in a wave and keeps walking, doesn’t even turn around.
Curtis curls himself around my leg, sniffing the food.
“Meow.”
I pull the dumplings to my chest. “Don’t even think about it, cat.”
* * *
That night after the most delicious meal we’ve had in weeks, I’m tiptoeing across the hallway to my parents’ bedroom with the stupid first package when I hear Mom talking to Dad downstairs.
“I just don’t want him to be devastated,” she says. “I know that every one of those boys, including Golden, is dreaming about being voted captain and wearing that armband. Life is hard enough for him right now.” I crane my neck to hear more, but Dad’s voice is lowered and more muffled. I hope he’s not crying. He’s more emotional now, an odd and puzzling ALS symptom from all the neurons in his head shriveling into nothing.
But it doesn’t matter. Sometimes Mom just doesn’t get it.
Life is not hard for me right now—soccer is starting!
I mean, I know better than a lot of people that bad things happen, but not during soccer season. I’m going to be so good at preseason that I’ll earn the Messi position—starting forward.
As for the captain thing? I never told Mom I wanted to be captain.
But she’s right. It’s true. I do.
Just like Messi.
If I can follow in his shoes, we’ll be unbeatable.
“Hey, Golden,” Mom calls from downstairs, making me jump. “Come help for a second?”
I slide back across the hallway in my socks to my bedroom before I go. Instead of tossing Mom’s package onto her bed like I planned, I defiantly shove it under my bed so she’ll never find a book entitled How to Talk to Your Kids About Dying. A book nobody in this family needs.
Poor Mom.
Doesn’t she know Dad’s unbeatable too?
It Happened Like This
Your love makes me strong, your hate makes me unstoppable!
—CRISTIANO RONALDO
Look, I’m not totally delusional.
Dad has ALS.
I know that.
We found out one year and six months ago. It was just after Valentine’s. Lucy, Benny, and I had just come in from sledding.
“Where’s Mom and Dad?” I asked.
“How do you not know where they are?” Jaimes asked.
“They’re still not back?”
She shook her head and looked out the window.
“Party!” I shouted. Jaimes looked at me, daggers in her eyes, but I didn’t know why she was so touchy. It was just a doctor’s appointment. Yeah, it was in Boston, which was weird, but Dad was in the best shape of anyone I knew. All the other dads joked about Dad’s superhuman fitness.
So Lucy, Benny, and I ignored Jaimes’s mood and started watching a movie.
I looked up from the screen when I heard my parents finally come in. It was Mom’s face I remember most. Something was wrong. And it wasn’t the popcorn mess I’d made in the kitchen.
Her eyes were rimmed red. Her whole face looked swollen.
Lucy and Benny left quickly even though the movie wasn’t over, and suddenly there was a family meeting.
“Are you okay, Daddy?” Roma asked.
“No, I’m not, honey.” He spoke slowly, with a strange calm, his dark eyes slightly unfocused.
“What is it?” Jaimes asked. She was already crying, which really ticked me off.
“They think your father has what’s called amyotrophic lateral sclerosis,” Mom said, blinking her watery eyes.
“They think?” Jaimes asked hopefully. “So he might not?”
“I have it,” Dad said. He wasn’t crying. And it reassured me. I took my cue from him and stayed calm too.
“What’s amyo-whatever?” Whitney asked.
“ALS,” Jaimes said. “I’ve heard of it.”
“It means that over time, I’m going to lose the ability to move my muscles,” Dad said. Roma inched closer and climbed into his lap.
There was a long silence as he hugged her to him.
“This is a progressive disease,” Dad said finally. “Remember when we played soccer a few weeks ago, Golden, and I just thought I was really out of shape? And you know how I keep dropping things?”
Everyone nodded but me.
“It’s my muscles. It’s the disease.”
“For some reason,” Mom said, her voice becoming steelier, “Dad’s neurons—the cells in his brain and spinal cord—are atrophying. They’re dying, so the muscles aren’t getting the signals they need to work.”
“It’s really handy to have a biologist as a wife,” Dad said, smiling slightly as he reached over and took Mom’s hand.
“Why are they dying?” Whitney asked.
“No one knows,” Mom said. “There are really no known causes. But you won’t catch it or anything.”
“So what now?” Jaimes asked.
“It’s a little different for everyone,” Dad said. “But your muscles control your ability to walk and move and talk and breathe, so eventually I will probably not be able to do those things… but that’s eventually. Not now.”
Not now.
That’s what he said. Not now.
I took a visual inventory. Dad was really strong. Big hands, big arms, and defined shoulders. He was walking and talking and definitely breathing.
Dad was just fine. This couldn’t be right.
“You said it was probably tendonitis,” I said.
Dad’s eyes met mine. “It’s not, and I’m so sorry, buddy. I wish it were.”
“Maybe it’s Lyme disease,” I said. “Probably Curtis Meowfield brought a tick in the house.”
“He tested negative,” Mom said, shaking her head.
“It could be wrong.”
“They’re sure,” Dad said.
I could feel my body threatening to blow up right then and there.
“The important thing is that we love you all very much, and no matter what happens we will always be a family,” Mom said, like she was quoting a brochure.
“So…,” Jaimes said slowly. “Is there a cure?”
Mom blinked several times.
“At this moment, no,” Dad said.
“But no one’s stronger than your dad,” Mom said. “So we’re going to fight as hard as we can fight for as long as we can.”
We nodded because this is the language o
f my parents. In the kitchen there’s a big sign that says MARONI FAMILY, overlaid with cursive writing, We Do Hard Things.
That’s what we do. Work hard. Bounce. Pivot. Find the possible. At this moment. That didn’t mean never.
But Jaimes kept pressing in the wrong direction.
“Did the doctors give you a timeline?”
“Three to five years is the average length of the disease,” Dad said. His voice broke slightly and he cleared his throat. “Sometimes less, sometimes more. I’ve likely had it for a while now.”
“So you’ll only have it for three to five years?” Whitney asked.
“Yes,” Mom answered. “But… he won’t get better.”
Jaimes leaned back into the couch, her arms folded across her chest, her mouth set in a very straight line.
“And then what?” Whitney asked, confused. “After three to five years?”
“Well,” Mom said, her voice getting very quiet. “He will probably… pass away.”
“Pass away,” Roma echoed, looking around the room for more explanation. But no one could say it. No one could say “die.”
But they thought it.
There was this noise, like all the air being sucked out of the room. Followed by a commotion. There were sobbing sounds. There was hugging. There were tears coming down faces. Except for mine.
I sat on the couch, alone. Like a stone.
Because you know what I heard Mom say?
He will probably pass away.
Probably.
So… there was a chance. A chance he could live.
I would make sure he got that chance.
Ninja Tongue-Twister Champ of the Three Worst Words
I’m not gonna be most people.
—GOLDEN
All these months later we’re still working on it, but every month it seems to get just a little bit harder.
Amyotrophic lateral sclerosis.
It’s three long words, and I can say it faster than anyone in the family, like a ninja tongue-twister champ. I didn’t mean to get so good at it, but it goes through my head over and over and over like a soccer move I can’t shake. It’s a super-frustrating disease to fight. One day a muscle moves—the next day? Nope.
Ten Thousand Tries Page 2
