100 Days (6 page)

The principal sighs.

I look down at my hands, which are dotted with calluses where the ax handle and the sledge handle and the mucking fork handle and the shovel handle have rubbed in different spots. My fingernails are chewed down and grimy, and my wrists disappear into the ratty but still-hanging-in-there cuffs of my dad's old Carhartt jacket. I'm embarrassed by these hands. Nobody else at school has hands like these, but what am I supposed to do? Stop using them? That's a laugh.

Thing is, Weaver's right. I know I should chill out, but how can I when people are constantly trying to get a rise out of me? They have no idea what I'm capable of doing to them, either. I would gladly kill the next jock who gave me shit if I thought I could get away with it. But you can't say that kind of thing in “regular” school.

You have to keep it inside.

That's not how it was in my alternative classes. The ACE building is only about a hundred yards away from where I'm sitting now, but it couldn't have been more different from the regular version of high school Weaver's so proud of. Not that it was an endless group therapy session or anything. It was still school. Hell, it was
this
school, but at least we bad seeds had some time and space most days to chill a little and talk about whatever stuff might be eating away at us. At least I got to hang out with students from all four grades and not just other sophomores like me. Now that we're all mainstreamed, I only see the other ACE kids in the hallways and in a few of my classes. It almost seems like the new schedules were designed to keep the former ACE tenth graders apart. Everyone's so busy trying to assimilate that we barely talk to one another. Sometimes there's a
S'up
, sometimes a quick chin-jut greeting, but that's it.

“Getting back to this most recent incident,” Weaver says, “we've contacted Ms. Delaney.”

“Agnes's mom,” I say, remembering.

“Yes. And she's agreed with our assessment that a form of … service on your part would be an appropriate response here. I'm thinking yard cleanup, maybe some heavy lifting she needs help with around the place. You're a strapping guy. You'll need to complete two days' worth of service, total. At least two hours each day. Weekdays after school or weekends are both fine.”

I have to work and haul water on the weekends, so that's out. “Do I have to?”

“It's that or long-term suspension at this point. Possibly expulsion.”

I don't need to think about this for very long. If I refuse to do the service, I'll be out of school. And no offense to Mom, but there isn't a chance in hell I'm going to spend more time at home than I absolutely have to. I love her and everything, but … no.

“I'll do it,” I tell Principal Weaver. “Yard work, lifting, whatever. I'll do the service.”

 

14

AGNES

DAY 87: MARCH 30

“Hey, Muscles!”

Dad calls me this sometimes, especially when it's been a while since we've seen each other. He first said it when I was in second grade and he let me win at arm wrestling.

I climb into the backseat of his car Wednesday after school. I have a doctor's appointment, and since I'll be spending the night at his house anyway, Dad thought it would be nice if he drove me there for a change. Afterward, we'll go get ice cream. When he asked what I thought of the idea, I heard Moira's voice in my head saying,
Whatever floats your boat.
Out loud I said, “Sounds great.”

Today's appointment should be pretty run-of-the-mill. Typically, a nurse will check my height and my weight, neither of which has gone up since I was seven. Dr. Caslow will ask if I have any new pain or mobility issues and give me updates on drug trials I've been invited to participate in. Occasionally, some specialist on aging or heart disease or Hutchinson-Gilford Progeria Syndrome (the fancy name for what I have) will ask for permission to publish the results of my various tests in medical journals. As a rare case (I'm almost sixteen and haven't croaked yet), I'm in pretty high demand that way.

Dr. Caslow is my main doctor. He's a gerontologist who also practiced pediatrics in his younger days. Sometimes I meet with him at the hospital instead of during his rounds at the senior center, like when specialized tests are needed, but that hasn't been the case for a while. I consider him family. Over the years, I've been poked and prodded by some of the top progeria doctors and researchers in the world, but he was the one who first diagnosed me when I was a toddler. Like most progeria kids, I looked totally normal when I was an infant. It wasn't until I was almost two years old that my growth slowed way down. My body was also starting to show some of the classic signs that a couple of doctors in nineteenth-century England first noted when they “discovered” the disorder that would one day be mine: there was my skinny little body and my comparatively too-large head to start with. Then there was my hair, which was falling out, and my skin, which looked and felt like it was drying up.

Today, Dr. Caslow is going to check my joints, which have been really sore lately, and my heart, which has started doing this flutter-kick sort of thing in my chest when I get even the slightest bit excited or upset. I know these things are to be expected. Kids like me deal with all the typical stuff old people do. We just do it sixty or seventy years early, when kids our actual, chronological age are cheerleading, skateboarding, and running track. I try not to let it get to me. Sometimes I even succeed.

*   *   *

Kitty's the first person I see when we walk through the big double doors of the senior center. She's a glamour queen in her dotage who used to be a foxy Chicago socialite. When Kitty moved here to be closer to her kids and grandkids, she refused to give up her makeup and diamonds and fancy clothes. Today, she's decked out in a silk pantsuit, lounging on one of the sofas in the lobby.

“Darling!” she cries, getting slowly to her feet when she spots me.

I walk into her open arms for a Chanel No. 5–scented hug. “Hi, Kitty.”

She winks at my dad. “And who is this handsome gentleman?”

“I'm Tom,” he says, holding out his hand.

“Kitty doesn't do handshakes,” she tells him. “Come here, you.”

“Oh,” he says, glancing at me for a terrified second as she grabs his forearm and pulls him into an embrace. “Okay.”

I try my best to keep a straight face. My dad has never been too comfortable around old people. The older I've gotten, the more he's treated me like an antique porcelain doll. We do less and less of the roughhousing I used to love when I was little and my parents were still together. Heck, even arm wrestling is out now. He's afraid I might get a dislocated shoulder or a broken humerus.

Kitty has released my dad. “Here for your checkup?” she asks, readjusting the elastic waistband of her suit.

I nod.

We check in at the front desk, and a pretty nurse who's new at the center shows us to the usual exam room. She hands me a gown and tells me I can change in the bathroom down the hall. “It could be a bit of a wait,” she tells us. “The doctor's a little behind schedule this afternoon.”

“No worries,” Dad says, smiling at her.

When I get back from the bathroom (clutching the gown closed with both hands), he's engrossed in one of the well-worn tabloid magazines from a rack next to his chair.

Before too long, Dr. Caslow comes in and gives me a high five. I wonder if he does this with his chronologically old patients, too. “How is she doing with medications?” he asks my dad as they shake hands. “Any issues with the statins?”

Dad looks at me and then back at Dr. Caslow. He knows I was put on statins in addition to the baby aspirin I was already taking to help keep my arteries from getting too hard and narrow, but the truth is he and I only see each other a few times a month, not enough for him to know much more than that. “I'm doing fine, mostly,” I say. “Sometimes my muscles get a little achy.”

The doctor pulls a little flashlight from the pocket of his coat and looks inside my mouth. “Well, that's to be expected, unfortunately,” he says. “While we don't really know if that's a medication issue or a progeria issue, we'll have a better idea of whether or not the meds are helping when we do your next round of blood work and scans.” He pulls an otoscope from the front pocket of his lab coat and looks inside my ears. “Still doing your stretches at home?”

“Yeah,” I say, grimacing. Every night before I go to sleep, Mom comes into my room and says, “Time for the rack.” Then she proceeds to stretch my joints and limbs in different directions just a little farther than is comfortable. It's supposed to limber me up and prevent injuries by keeping my muscles and tendons flexible, but I'm not sure it actually helps.

The nurse comes back in, and Dr. Caslow says he'll need to do a full physical exam. He asks my dad if he wants to stay in the room.

“He can leave,” I say, answering for him. Dad looks surprised and a little hurt, but I just say, “What? I'm almost sixteen!”
So what if my body's closer to a hundred? I'm still a teenager, darn it.

*   *   *

My stepmother, Jamey, has dinner ready when we get to the house. She's wearing her usual homeschool mom uniform—long denim skirt, a man's oversize button-down shirt, and no makeup. (
Holy roller,
Mom called her when Jamey and my dad first got married.
Tambourine smacker.
) Even now, more than five years later, Jamey and my mom have still only spoken a handful of times, usually on those rare occasions when Mom has picked me up from their house or Jamey has driven me home to Mom's. Jamey is born-again, and she believes in modesty and not in physical affection. To prove it, she doesn't hug me or Dad when we walk in, but she does say, “Greetings, fellow Delaneys.” (Mom also thought it was hilarious that Jamey's name changed to Jamey Delaney when she got married: “She sounds like a Dr. Seuss character!”)

I help Jamey finish setting the table for dinner and then go upstairs to summon my siblings. There are pictures of all of us on the wall next to the stairs, including one of me as a normal-looking baby. Of the three kids who live in this house full-time, Isaiah's the oldest. He's eleven, and he's Jamey's son from her first marriage. Even though Isaiah and I aren't related by blood, I still consider him to be my brother. Then there are my dad and Jamey's twins, Obadiah and Nevaeh, who are five now. They're playing Legos on the floor of Obi's bedroom, and when they see me standing in the doorway, they jump up to give me hugs. When they do, I realize that they're officially taller than me now. “Will you guys stop
growing
already?” I tease them. The twins are also starting to look more and more like my dad. He's their dad, too, of course, so it makes sense. Still, I'm hit by strange pangs of pride and jealousy at these new developments.

Isaiah, ever the vigilant big brother, comes out of his room and sees the twins wrapped around me. “Be careful,” he scolds them. “Agnes is delicate, remember?”

“It's okay,” I say, giving him a smile. “I'm sturdier than I look.” I grab the camera from my backpack and get the three of them to stand together in the hallway. “Say ‘stinky cheese,'” I tell them. Isaiah rolls his eyes, but the twins crack up and flash these huge grins, complete with gaps from their missing baby teeth, right as the shutter clicks.

*   *   *

Obi and Nevaeh snuggle up on either side of me before bedtime that night while I read their favorite story out loud.
“The Very Hungry Caterpillar,”
I begin, holding open the title page. “My friend Moira loves this one, too.”

“Who's Moira?” Nevvie wants to know.

“She's what you might call my BFF,” I tell her.

Nevvie looks at me for a long moment. Then she looks up toward the ceiling like she's puzzling something out in her head. “Bunny … Foo Foo?” she finally asks.

Obi throws his head back and lets out a high-pitched laugh, but it's clear he doesn't know what the letters stand for, either.

“No, silly. It means ‘best friend forever.' Seriously, you've never heard that?” I laugh, too, like my little sister made a funny joke on purpose, but I'm going to have to talk to Dad about this. What little kid doesn't know about BFFs? It's like not knowing about LOL or OMG. It's basic communication. I won't be around for too many more years to teach the twins these things, and I don't want any siblings of mine being treated like freaks when they go out into the real world.

“I've heard about Moira,” Obi says, still laughing. “Your BFF is big and fat.”

I freeze. “What did you just say?”

“You heard me. She has a big fat butt. Butts are
hilarious
.”

Even though I'm completely aghast, I try to keep a lid on it. “It's not nice to talk about people like that,” I tell Obi in the calmest voice possible.
Nice use of the word
hilarious
, though,
I think. I consider complimenting him on his vocabulary, but then I think better of it. The mixed message would probably just confuse him.

“But that's what Dad says,” Obi continues. “He says she's big and fat and that people get that way from eating too much.”

Wait, what?
Breath is backing up in my chest now. Dad and Moira have only met each other a few times over the years. After the first time, he called Mom and raised a stink about “that scary girl” being a bad influence on me.

“Why?” Mom challenged him. “Because of her fashion choices?”

“You call that
fashion
?” I could hear Dad's voice bristling through the phone as she held the receiver away from her ear and rolled her eyes.

“I call it independent thinking,” she fired back, “which is obviously something you're not familiar with.”