“I haven’t put my costume on yet!”
“So put it on, already. Five minutes. I’ll meet you outside.”
I rushed to my room and started to put on the Boba Fett costume, but all of a sudden I didn’t feel like wearing it. I’m not sure why—maybe because it had all these belts that needed to be tightened and I needed someone’s help to put it on. Or maybe it was because it still smelled a little like paint. All I knew was that it was a lot of work to put the costume on, and Dad was waiting and would get super impatient if I made him late. So, at the last minute, I threw on the Bleeding Scream costume from last year. It was such an easy costume: just a long black robe and a big white mask. I yelled goodbye from the door on my way out, but Mom didn’t even hear me.
“I thought you were going as Jango Fett,” said Dad when I got outside.
“Boba Fett!”
“Whatever,” said Dad. “This is a better costume anyway.”
“Yeah, it’s cool,” I answered.
The Bleeding Scream
Walking through the halls that morning on my way to the lockers was, I have to say, absolutely awesome. Everything was different now. I was different. Where I usually walked with my head down, trying to avoid being seen, today I walked with my head up, looking around. I wanted to be seen. One kid wearing the same exact costume as mine, long white skull face oozing fake red blood, high-fived me as we passed each other on the stairs. I have no idea who he was, and he had no idea who I was, and I wondered for a second if he would have ever done that if he’d known it was me under the mask.
I was starting to think this was going to go down as one of the most awesome days in the history of my life, but then I got to homeroom. The first costume I saw as I walked inside the door was Darth Sidious. It had one of the rubber masks that are so realistic, with a big black hood over the head and a long black robe. I knew right away it was Julian, of course. He must have changed his costume at the last minute because he thought I was coming as Jango Fett. He was talking to two mummies who must have been Miles and Henry, and they were all kind of looking at the door like they were waiting for someone to come through it. I knew it wasn’t a Bleeding Scream they were looking for. It was a Boba Fett.
I was going to go and sit at my usual desk, but for some reason, I don’t know why, I found myself walking over to a desk near them, and I could hear them talking.
One of the mummies was saying: “It really does look like him.”
“Like this part especially …,” answered Julian’s voice. He put his fingers on the cheeks and eyes of his Darth Sidious mask.
“Actually,” said the mummy, “what he really looks like is one of those shrunken heads. Have you ever seen those? He looks exactly like that.”
“I think he looks like an orc.”
“Oh yeah!”
“If I looked like that,” said the Julian voice, kind of laughing, “I swear to God, I’d put a hood over my face every day.”
“I’ve thought about this a lot,” said the second mummy, sounding serious, “and I really think … if I looked like him, seriously, I think that I’d kill myself.”
“You would not,” answered Darth Sidious.
“Yeah, for real,” insisted the same mummy. “I can’t imagine looking in the mirror every day and seeing myself like that. It would be too awful. And getting stared at all the time.”
“Then why do you hang out with him so much?” asked Darth Sidious.
“I don’t know,” answered the mummy. “Tushman asked me to hang out with him at the beginning of the year, and he must have told all the teachers to put us next to each other in all our classes, or something.” The mummy shrugged. I knew the shrug, of course. I knew the voice. I knew I wanted to run out of the class right then and there. But I stood where I was and listened to Jack Will finish what he was saying. “I mean, the thing is: he always follows me around. What am I supposed to do?”
“Just ditch him,” said Julian.
I don’t know what Jack answered because I walked out of the class without anyone knowing I had been there. My face felt like it was on fire while I walked back down the stairs. I was sweating under my costume. And I started crying. I couldn’t keep it from happening. The tears were so thick in my eyes I could barely see, but I couldn’t wipe them through the mask as I walked. I was looking for a little tiny spot to disappear into. I wanted a hole I could fall inside of: a little black hole that would eat me up.
Names
Rat boy. Freak. Monster. Freddy Krueger. E.T. Gross-out. Lizard face. Mutant. I know the names they call me. I’ve been in enough playgrounds to know kids can be mean. I know, I know, I know.
I ended up in the second-floor bathroom. No one was there because first period had started and everyone was in class. I locked the door to my stall and took off my mask and just cried for I don’t know how long. Then I went to the nurse’s office and told her I had a stomach ache, which was true, because I felt like I’d been kicked in the gut. Nurse Molly called Mom and had me lie down on the sofa next to her desk. Fifteen minutes later, Mom was at the door.
“Sweetness,” she said, coming over to hug me.
“Hi,” I mumbled. I didn’t want her to ask anything until afterward.
“You have a stomach ache?” she asked, automatically putting her hand on my forehead to check for my temperature.
“He said he feels like throwing up,” said Nurse Molly, looking at me with very nice eyes.
“And I have a headache,” I whispered.
“I wonder if it’s something you ate,” said Mom, looking worried.
“There’s a stomach bug going around,” said Nurse Molly.
“Oh geez,” said Mom, her eyebrows going up as she shook her head. She helped me to my feet. “Should I call a taxi or are you okay walking home?”
“I can walk.”
“What a brave kid!” said Nurse Molly, patting me on the back as she walked us toward the door. “If he starts throwing up or runs a temperature, you should call the doctor.”
“Absolutely,” said Mom, shaking Nurse Molly’s hand. “Thank you so much for taking care of him.”
“My pleasure,” answered Nurse Molly, putting her hand under my chin and tilting my face up. “You take care of yourself, okay?”
I nodded and mumbled “Thank you.” Mom and I hug-walked the whole way home. I didn’t tell her anything about what had happened, and later when she asked me if I felt well enough to go trick-or-treating after school, I said no. This worried her, since she knew how much I usually loved trick-or-treating.
I heard her say to Dad on the phone: “… He doesn’t even have the energy to go trick-or-treating.… No, no fever at all … Well, I will if he doesn’t feel better by tomorrow.… I know, poor thing … Imagine his missing Halloween.”
I got out of going to school the next day, too, which was Friday. So I had the whole weekend to think about everything. I was pretty sure I would never go back to school again.
Far above the world
Planet Earth is blue
And there’s nothing I can do
—David Bowie, “Space Oddity”
A Tour of the Galaxy
August is the Sun. Me and Mom and Dad are planets orbiting the Sun. The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun. The only celestial body that doesn’t orbit August the Sun is Daisy the dog, and that’s only because to her little doggy eyes, August’s face doesn’t look very different from any other human’s face. To Daisy, all our faces look alike, as flat and pale as the moon.
I’m used to the way this universe works. I’ve never minded it because it’s all I’ve ever known. I’ve always understood that August is special and has special needs. If I was playing too loudly and he was trying to take a nap, I knew I would have to play something else because he needed his rest after some procedure or other had left him weak and in pain. If I wanted Mom and Dad to watch me play soccer, I knew that nine out of ten times
they’d miss it because they were busy shuttling August to speech therapy or physical therapy or a new specialist or a surgery.
Mom and Dad would always say I was the most understanding little girl in the world. I don’t know about that, just that I understood there was no point in complaining. I’ve seen August after his surgeries: his little face bandaged up and swollen, his tiny body full of IVs and tubes to keep him alive. After you’ve seen someone else going through that, it feels kind of crazy to complain over not getting the toy you had asked for, or your mom missing a school play. I knew this even when I was six years old. No one ever told it to me. I just knew it.
So I’ve gotten used to not complaining, and I’ve gotten used to not bothering Mom and Dad with little stuff. I’ve gotten used to figuring things out on my own: how to put toys together, how to organize my life so I don’t miss friends’ birthday parties, how to stay on top of my schoolwork so I never fall behind in class. I’ve never asked for help with my homework. Never needed reminding to finish a project or study for a test. If I was having trouble with a subject in school, I’d go home and study it until I figured it out on my own. I taught myself how to convert fractions into decimal points by going online. I’ve done every school project pretty much by myself. When Mom or Dad ask me how things are going in school, I’ve always said “good”—even when it hasn’t always been so good. My worst day, worst fall, worst headache, worst bruise, worst cramp, worst mean thing anyone could say has always been nothing compared to what August has gone through. This isn’t me being noble, by the way: it’s just the way I know it is.
And this is the way it’s always been for me, for the little universe of us. But this year there seems to be a shift in the cosmos. The galaxy is changing. Planets are falling out of alignment.
Before August
I honestly don’t remember my life before August came into it. I look at pictures of me as a baby, and I see Mom and Dad smiling so happily, holding me. I can’t believe how much younger they looked back then: Dad was this hipster dude and Mom was this cute Brazilian fashionista. There’s one shot of me at my third birthday: Dad’s right behind me while Mom’s holding the cake with three lit candles, and in back of us are Tata and Poppa, Grans, Uncle Ben, Aunt Kate, and Uncle Po. Everyone’s looking at me and I’m looking at the cake. You can see in that picture how I really was the first child, first grandchild, first niece. I don’t remember what it felt like, of course, but I can see it plain as can be in the pictures.
I don’t remember the day they brought August home from the hospital. I don’t remember what I said or did or felt when I saw him for the first time, though everyone has a story about it. Apparently, I just looked at him for a long time without saying anything at all, and then finally I said: “It doesn’t look like Lilly!” That was the name of a doll Grans had given me when Mom was pregnant so I could “practice” being a big sister. It was one of those dolls that are incredibly lifelike, and I had carried it everywhere for months, changing its diaper, feeding it. I’m told I even made a baby sling for it. The story goes that after my initial reaction to August, it only took a few minutes (according to Grans) or a few days (according to Mom) before I was all over him: kissing him, cuddling him, baby talking to him. After that I never so much as touched or mentioned Lilly ever again.
Seeing August
I never used to see August the way other people saw him. I knew he didn’t look exactly normal, but I really didn’t understand why strangers seemed so shocked when they saw him. Horrified. Sickened. Scared. There are so many words I can use to describe the looks on people’s faces. And for a long time I didn’t get it. I’d just get mad. Mad when they stared. Mad when they looked away. “What the heck are you looking at?” I’d say to people—even grown-ups.
Then, when I was about eleven, I went to stay with Grans in Montauk for four weeks while August was having his big jaw surgery. This was the longest I’d ever been away from home, and I have to say it was so amazing to suddenly be free of all that stuff that made me so mad. No one stared at Grans and me when we went to town to buy groceries. No one pointed at us. No one even noticed us.
Grans was one of those grandmothers who do everything with their grandkids. She’d run into the ocean if I asked her to, even if she had nice clothes on. She would let me play with her makeup and didn’t mind if I used it on her face to practice my face-painting skills. She’d take me for ice cream even if we hadn’t eaten dinner yet. She’d draw chalk horses on the sidewalk in front of her house. One night, while we were walking back from town, I told her that I wished I could live with her forever. I was so happy there. I think it might have been the best time in my life.
Coming home after four weeks felt very strange at first. I remember very vividly stepping through the door and seeing August running over to welcome me home, and for this tiny fraction of a moment I saw him not the way I’ve always seen him, but the way other people see him. It was only a flash, an instant while he was hugging me, so happy that I was home, but it surprised me because I’d never seen him like that before. And I’d never felt what I was feeling before, either: a feeling I hated myself for having the moment I had it. But as he was kissing me with all his heart, all I could see was the drool coming down his chin. And suddenly there I was, like all those people who would stare or look away.
Horrified. Sickened. Scared.
Thankfully, that only lasted for a second: the moment I heard August laugh his raspy little laugh, it was over. Everything was back the way it had been before. But it had opened a door for me. A little peephole. And on the other side of the peephole there were two Augusts: the one I saw blindly, and the one other people saw.
I think the only person in the world I could have told any of this to was Grans, but I didn’t. It was too hard to explain over the phone. I thought maybe when she came for Thanksgiving, I’d tell her what I felt. But just two months after I stayed with her in Montauk, my beautiful Grans died. It was so completely out of the blue. Apparently, she had checked herself into the hospital because she’d been feeling nauseous. Mom and I drove out to see her, but it’s a three-hour drive from where we live, and by the time we got to the hospital, Grans was gone. A heart attack, they told us. Just like that.
It’s so strange how one day you can be on this earth, and the next day not. Where did she go? Will I really ever see her again, or is that a fairy tale?
You see movies and TV shows where people receive horrible news in hospitals, but for us, with all our many trips to the hospital with August, there had always been good outcomes. What I remember the most from the day Grans died is Mom literally crumpling to the floor in slow, heaving sobs, holding her stomach like someone had just punched her. I’ve never, ever seen Mom like that. Never heard sounds like that come out of her. Even through all of August’s surgeries, Mom always put on a brave face.
On my last day in Montauk, Grans and I had watched the sun set on the beach. We had taken a blanket to sit on, but it had gotten chilly, so we wrapped it around us and cuddled and talked until there wasn’t even a sliver of sun left over the ocean. And then Grans told me she had a secret to tell me: she loved me more than anyone else in the world.
“Even August?” I had asked.
She smiled and stroked my hair, like she was thinking about what to say.
“I love Auggie very, very much,” she said softly. I can still remember her Portuguese accent, the way she rolled her r’s. “But he has many angels looking out for him already, Via. And I want you to know that you have me looking out for you. Okay, menina querida? I want you to know that you are number one for me. You are my …” She looked out at the ocean and spread her hands out, like she was trying to smooth out the waves, “You are my everything. You understand me, Via? Tu es meu tudo.”
I understood her. And I knew why she said it was a secret. Grandmothers aren’t supposed to have favorites. Everyone knows that. But after she died, I held on to that secret and let it cover me like a blanket.
&nb
sp; August
Through the Peephole
His eyes are about an inch below where they should be on his face, almost to halfway down his cheeks. They slant downward at an extreme angle, almost like diagonal slits that someone cut into his face, and the left one is noticeably lower than the right one. They bulge outward because his eye cavities are too shallow to accommodate them. The top eyelids are always halfway closed, like he’s on the verge of sleeping. The lower eyelids sag so much they almost look like a piece of invisible string is pulling them downward: you can see the red part on the inside, like they’re almost inside out. He doesn’t have eyebrows or eyelashes. His nose is disproportionately big for his face, and kind of fleshy. His head is pinched in on the sides where the ears should be, like someone used giant pliers and crushed the middle part of his face. He doesn’t have cheekbones. There are deep creases running down both sides of his nose to his mouth, which gives him a waxy appearance. Sometimes people assume he’s been burned in a fire: his features look like they’ve been melted, like the drippings on the side of a candle. Several surgeries to correct his palate have left a few scars around his mouth, the most noticeable one being a jagged gash running from the middle of his upper lip to his nose. His upper teeth are small and splay out. He has a severe overbite and an extremely undersized jawbone. He has a very small chin. When he was very little, before a piece of his hip bone was surgically implanted into his lower jaw, he really had no chin at all. His tongue would just hang out of his mouth with nothing underneath to block it. Thankfully, it’s better now. He can eat, at least: when he was younger, he had a feeding tube. And he can talk. And he’s learned to keep his tongue inside his mouth, though that took him several years to master. He’s also learned to control the drool that used to run down his neck. These are considered miracles. When he was a baby, the doctors didn’t think he’d live.
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