“I’m very proud of you, Tory,” Mom said. Then, “Did you take your pills?”
“Yep.” I shook the big white bottle from side to side. Those pills! I have to take them so that I can digest my food. It's one of the problems with cystic fibrosis. My CF doctor, Dr. Mallers, calls it a “pancreatic insufficiency.” That means mucus blocks my pancreas so it can’t send out the enzymes I need to digest food. I have to take the enzymes in a pill to do the work my pancreas can’t. That part is pretty simple. I can even swallow all eight of my enzymes at once. It’s just a pain that Mom always reminds me to take them. I’ve been taking them since I was three years old and I hardly ever forget.
“Are you ready for your therapy?” Mom asked, pouring herself a cup of coffee.
“Yep!” I gulped down the last of the orange juice and set my glass in the sink. Mom and I headed up to my room. Since I hadn’t eaten much, and most of my eating had taken place almost an hour earlier, it wouldn’t be such a problem to do my therapy after breakfast. Usually, though, we try to do it either before I eat or at least an hour after, so I don’t throw up when I cough to clear my lungs.
Actually, I have to wake up pretty early every day. School doesn’t start until nine, but I have to get up at seven, which is earlier than even my sister and brother. Alec is in eighth grade at my school, and he usually wakes around eight-thirty, throws on clothes, grabs a piece of toast, and runs out the door. People who know him know he is always late for everything. My mom says Alec was even born late! My sister, Jenny, who is a junior in high school, doesn’t wake until seven-thirty because her school is only three blocks away, and her first class doesn’t start until later.
Every morning Mom comes into my room very quietly and tells me it’s time to wake up and do my breathing therapy. The biggest problem when you have cystic fibrosis is that you have all this thick, sticky mucus in your lungs. That makes it hard to breathe. So I have to do breathing therapy twice a day, every day, to loosen up the mucus so I can cough it out. First, I strap myself into a vest that looks a lot like the kind you wear when you’re going out on a boat. Except it’s not puffy and orange. My vest is purple and when I first put it on it’s flat and floppy. I hook it up to two hoses attached to a machine I keep by my bed. When I turn the machine on the vest fills up with air and starts pumping and shaking. All that pumping and shaking moves the mucus. I also use a smaller machine, called a nebulizer. It plugs into the wall too. I use the nebulizer to inhale a medicine called a bronchodilator. That helps open all the passages in my lungs. I have to pour the medicine into a little plastic cup that closes up tightly so it doesn’t spill. When I turn on the neb, the liquid turns to mist so I can breathe it in through a mouthpiece.
While I use the neb, Mom sits with me and chats or reads to me. When I was little, Mom used to do my therapy by hand. She gently pounded on my chest, back and sides with her cupped hands to loosen the stuff in my lungs. It kind of sounded like she was clapping in rhythm or beating on a drum, and it didn’t hurt. But once we started using this machine Mom doesn’t have to do so much. We still like to spend my therapy time together, though.
When I finish with the first nebulizer medicine Mom unhooks that one and attaches another. This one helps break up the mucus in my lungs. I can’t talk when I’m doing my nebs because I have a thing in my mouth, the mouthpiece. When the nebs are done sometimes I almost fall asleep again. The thumping of the machine is sort of lulling.
After I finish the nebs and the machine, I’m supposed to cough hard and clear as much mucus as I can from my lungs. It’s pretty easy to do, because, after the medicines and pounding and shaking and vibrating, the stuff in my lungs is loosened up and ready to go.
Mom gives me a box of tissues, and I start to cough. It usually takes a few minutes, but I get a lot of stuff out. The mucus is yellow, and it’s thick. If I have an infection in my lungs, the mucus is green. When I feel like I have cleared as much as I can I have to do one more nebulizer treatment. This one is an antibiotic, and I only have to take it every other month. I do all this in the morning so I can breathe easily all day at school like everyone else. I do the whole thing again before I go to bed, too, so I can sleep well. If I didn’t do therapy at night I would be awake all night coughing, and no one in my house would get any sleep. Usually Dad hangs out with me while I do my therapy at night. He likes to sing, so we listen to music and sometimes he plays his guitar for me.
* * * *
Mom and I finished, and I got dressed as fast as I could. On the phone the night before, Kelly and I had decided that today we would wear our plaid skirts over black leggings with white button-down shirts. I pulled my hair back in a headband and brushed it into a ponytail. My hair was very blonde from the summer sun. I still had a good tan, too, which made my green eyes look light. I checked myself in the full-length mirror behind the bathroom door. My sister says it’s important to always check a mirror before you leave the house. Once, she forgot, and she wore the price tag hanging from the back of her shirt all morning before one of her friends finally pointed it out. How embarrassing!
My mirror image looked good to me. I looked thin, definitely thinner than most of my class, but still not too skinny. I’m kind of short, though. Sometimes when you have cystic fibrosis, it’s hard to grow as well as other kids. When you can’t digest food, you can’t grow. I had that problem when I was little, before I was diagnosed with CF. I used to eat and eat, but I didn’t gain much weight because the food went right through me. Once the doctor figured out what was wrong I started doing therapy and taking enzymes. I gained weight and grew more. I still eat a lot, though, and I’m still a little shorter than almost all the kids in my class.
Kelly says I make her feel like a basketball player. We measured each other a couple of weeks ago. Kelly is three and a half inches taller than I am. I checked the place inside the pantry wall where Mom marks how tall Jenny, Alec, and I are every six months. When Jenny was my age, she was almost three inches taller than I am now.
I straightened my skirt and picked up my backpack from the floor. Kelly would be on the corner waiting, and I had to hurry. Mom was back in the kitchen fixing breakfast for everyone else. I darted through the kitchen and kissed Mom on the cheek. I grabbed my lunch bag off the counter and headed out the door. Kelly and I had decided not to scooter to school anymore.
Chapter Six
I kept watching the clock. The morning dragged on and on. Mrs. Jason made us read out loud from the history book. I like doing that and I think I’m pretty good at it. A lot of the kids in my class hate it. I can tell by the way they look everywhere but at the teacher when she's deciding whom to call on to read next. When we were done, we worked on the questions at the end of the chapter. After that, Mrs. Jason had us go over each answer out loud, one by one. I thought we would never finish! Then she passed out new spelling books, and we worked on chapter one for a while. It felt like recess would never come. After forever and a day, the recess bell rang. Kelly and I had already started to run out of the classroom when Mrs. Jason called us back.
“Tory, Kelly, remember you start your volunteer work in Miss Denny’s kindergarten this morning,” she said.
Forget? It was all I had thought about since yesterday.
“We know,” Kelly said, “and we don’t want to be late.”
Mrs. Jason smiled. “Hurry then,” she said, “but no running in the halls.”
Miss Denny’s kindergarten was on the first floor just inside the main entrance of our school. When we got there, all the kids were sitting in a circle. They were so cute. And so little! I don’t remember ever being that little. I could hardly believe how small the kindergarten classroom, and all the furniture in it were. Everything seemed miniature! Could the room truly have been that small when I was in Miss Denny’s class? The weirdest thing I noticed was that she didn’t look any older than she did when I was in kindergarten. She still wore her brown hair in a bun. Her clothes didn’t look any different, either. I whispe
red this to Kelly. She whispered back with a giggle, “You’re right!”
Miss Denny asked Kelly and me to introduce ourselves to her class, and then she asked the kids to tell us their names. As they introduced themselves, I tried hard to commit each name to memory. I think I got them all on the first round. I counted twelve boys and ten girls. Five of the kids didn’t speak English because they were from other countries. Their parents were working in the United States temporarily, and the kids were part of the special Children of Foreign Diplomats Program at our school. They knew they were supposed to tell us their names by copying what the other kids were doing. When all the introductions were made, Miss Denny asked them to line up, boys in one line and girls in another. She took us all outside to the little playground behind the school. The kindergartners have their own place to play, away from the big kids. There are swings, a hopscotch painted on the ground, and a thing to climb on that’s green and sort of looks like a turtle. I wasn’t sure exactly what it was when I was in kindergarten, and I'm still not.
“I’ll be back when the bell rings,” Miss Denny told us. Then to the kids, who were already running around and screaming, she said in her loud teacher voice, “Mind Kelly and Tory!” I don’t think the kids were listening to her.
“Well,” Kelly asked me, “what do we do with them now?”
“Just watch them play and make sure they stay out of—” I was about to say “trouble,” but Kelly said it first because she saw one of the little boys pushing a girl over at the hopscotch. Kelly and I both ran over.
“Hey!” Kelly yelled. “What did you do that for? Why did you push her?” Kelly had the little boy by the sleeve. He didn’t say anything; he just looked at her. The little girl he pushed looked up at me, and she had dirty tears on her face.
“He doesn’t talk English,” she sobbed.
“Oh,” I said lamely.
The boy laughed, pulled his arm away from Kelly and ran off to join some other boys.
I kneeled down so that I was face-to-face with the little girl. I tried to remember her name, but I wasn’t sure if she was Liza or Amy.
“Are you okay?”
“Yeah.” She sniffled, and then she put her arms around my neck. I was pretty surprised, but I hugged her back anyway.
“Do you remember my name?” I asked her. She looked at me shyly.
“Tory.”
“You must be pretty smart because you remembered my name, but I think I forgot yours.”
She wiped her runny nose on the sleeve of her dress. “My name is Liza Frank, and I’m five years old,” she said. She had a big smile on her face, as if to say I was silly for not remembering.
“I don’t like that boy,” she told me then. “He’s mean. His name is Claude, and he only speaks Frennish.”
“French,” I corrected her with a smile, “and he’ll learn to speak English as well as you do pretty soon.”
“I still won’t like him,” Liza said. I couldn’t blame her because when we both looked over at Claude, he was pushing both Josh Diaz and Adam Whittaker at the same time. What a bully!
“Maybe he is just trying to make friends but doesn’t know how to. You know since he doesn’t speak English,” I suggested. The look on Liza’s face said she was thinking about it but didn’t buy it.
Kelly went after Claude again, but before she could get to him the bell rang. Recess was over. The time had really flown by. Our first day with the kindergarten was already done.
“Line up kids! Two lines,” Kelly called. The kids followed directions pretty well, even the five who didn’t speak English. We took them back into their classroom where Miss Denny was waiting.
“Thank you, girls,” she said to us. “We’ll see you tomorrow.”
We left the room and headed back upstairs to the sixth grade.
“That was hard work, Tory. Tell me again why we wanted to be kindergarten helpers,” Kelly said, sounding tired. I just laughed at her. She started laughing too.
Chapter Seven
By the beginning of October four of the five French kindergartners were practically fluent in English. Little Gia Giorgopoulos, who was already fluent in both French and Greek, could now also speak English as if she had always known how. I only wished I were doing as well in my French class. I was nowhere near fluent even though I had been taking French for three years. It’s not as if I don’t practice, either. Kelly and I practice speaking French to each other a lot.
Kelly and I read books to the kids on rainy days when we had to stay inside during recess. We tried to read storybooks in French a few times. I think I was a little better at it than Kelly. But the French kids just giggled at our accents. Sometimes they asked, “What are you saying?” and they laughed. But sometimes they were nice and helped by telling us the right way to say the words. Only Claude still didn’t speak English very well. I think he was doing it on purpose! Claude seemed just as smart as the other kids. He was probably just giving us all a hard time to get attention.
One evening during the second week of October, I was lying on my bed studying for a math quiz. The phone rang. There’s a phone in almost every room in our house except for my room, where I think there needs to be one!
“Tory! Phone!” Jenny yelled up the stairs. My dad hates it when any of us yell through the house. He always says, “If you have something to say, come here and say it.”
But that night my parents were out to dinner with my dad’s business partner and his wife, so Jenny didn’t get in trouble. When I picked up the phone in my parents’ room, I yelled down, “Got it!”
“Hello?” I answered.
“Hi, Tory. It’s me.” Kelly always says that.
“What’s up? Are you studying for math?”
“Yeah. But that’s not what I’m calling about. Guess what?” she teased, sounding extremely excited.
“What?” I was tired and not in the mood to play Kelly’s guessing games.
“Since Halloween is going to be on a Saturday this year, my mom said I can have a Halloween party!”
“Great!” I said. “What kind of party is it going to be?”
“A Halloween party, dummy.” Ugh, I hate it when Kelly acts like that. I don’t think she means to be rude, though, so I usually just ignore it.
“I know that, but I mean, is it going to be girls and boys or just girls? During the day? At night? Give me some detail, Kelly.”
“Sleepover!” Kelly squealed.
“Awesome!” I had never been to a sleepover party before.
“I want you to help me with the guest list and the decorations. Oh, and I think I have a pretty cool idea for what we can dress up as this year.”
I can’t remember the last time I actually decided on my own Halloween costume. Every year, Kelly thinks up our costumes. I go along with her ideas because they’re usually pretty cool. Except when we were in fourth grade. Kelly had us dress up as babies. We carried bottles and pacifiers and wore bibs over pink footie pajamas. It was so embarrassing! The rest of the class teased us and called us the Diaper Twins until winter break! I was pretty curious to hear what this year’s costume would be. Before I could ask, Mom and Dad were home, and Dad said he needed to use the phone to make an important business call. I hadn’t even heard them come home. I told Kelly I would have to wait in suspense until the next morning, and then I hung up. Dad thanked me and picked up the phone to make his call, and Mom followed me out of the room.
“Did Jenny help you with your therapy this evening?” Mom asked.
“No. She was studying. I didn’t want to bother her.”
“Tory,” Mom scolded, “it’s not a bother. I told her you were going to ask her to do it while we were out.”
“I know,” I mumbled. Mom always says it isn’t a bother, but I’m never sure whether or not to believe her. I mean, just because I have to make time in my schedule to do therapy doesn’t mean Jenny should have to. After all, I am the one who has CF, not her. It isn’t her problem.
“Wel
l, it’s getting late, and Dad will be on the phone for a while, so let’s get started.”
While Mom got my neb ready, I hooked up my machine. I tried to imagine what crazy Halloween costume Kelly had in mind for us this year.
Then I had a terrible thought. What would I do about my therapy at a sleepover party?
Chapter Eight
Kelly talked about the Halloween party all the way to school the next morning. I was only half listening, thinking about my therapy again. I wanted to talk to Kelly about it, but her little sister, Kristen, who is a third grader, was walking with us. Kristen usually walks with her twin brother Hayden. They’re allowed to walk to school together without an older kid or a parent, but they aren’t allowed to walk alone. Since he was home sick with the flu, she had to come with us. I would have to wait until after school to talk to Kelly about my problem because I didn’t feel like discussing it in front of Kristen. Besides, even if I had wanted to say anything, Kelly was talking so much and so fast I don’t think I could have gotten a word in anyway.
At recess that morning I was pushing two of the little French girls, Dominique and Michelle, on the swings. I didn’t notice that Liza had snuck up beside me. She tugged on the bottom of my jacket. When I looked down and saw her standing there, I was worried she might get hit by one of the swings. I took her hand and walked her out of the way.
Liza was always standing by me. She’s a cute little kid. Her hair is super thick, and it’s a dark shade of red I've never seen before. She has matching freckles and rosy cheeks. Liza isn’t chubby, exactly, but she is very solid. That’s a word I’ve heard my mom use. I guess it must mean “heavy” because I can pick up a lot of the kindergartners, but I am definitely not strong enough to lift Liza. She’s tall for her age, and I’m short for my age so that’s probably why I can’t pick her up.
What Are You Hiding, Tory? (9781771275347) Page 2
