Part Two - Via
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.
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.
He can hear, too. Most kids born with these types of birth defects have problems with their middle ears that prevent them from hearing, but so far August can hear well enough through his tiny cauliflower-shaped ears. The doctors think that eventually he’ll need to wear hearing aids, though. August hates the thought of this. He thinks the hearing aids will get noticed too much. I don’t tell him that the hearing aids would be the least of his problems, of course, because I’m sure he knows this.
Then again, I’m not really sure what August knows or doesn’t know, what he understands and doesn’t understand.
Does August see how other people see him, or has he gotten so good at pretending not to see that it doesn’t bother him? Or does it bother him? When he looks in the mirror, does he see the Auggie Mom and Dad see, or does he see the Auggie everyone else sees? Or is there another August he sees, someone in his dreams behind the misshapen head and face? Sometimes when I looked at Grans, I could see the pretty girl she used to be underneath the wrinkles. I could see the girl from Ipanema inside the old-lady walk. Does August see himself as he might have looked without that single gene that caused the catastrophe of his face?
I wish I could ask him this stuff. I wish he would tell me how he feels. He used to be easier to read before the surgeries. You knew that when his eyes squinted, he was happy. When his mouth went straight, he was being mischievous. When his cheeks trembled, he was about to cry. He looks better now, no doubt about that, but the signs we used to gauge his moods are all gone. There are new ones, of course. Mom and Dad can read every single one. But I’m having trouble keeping up. And there’s a part of me that doesn’t want to keep trying: why can’t he just say what he’s feeling like everyone else? He doesn’t have a trache tube in his mouth anymore that keeps him from talking. His jaw’s not wired shut. He’s ten years old. He can use his words. But we circle around him like he’s still the baby he used to be. We change plans, go to plan B, interrupt conversations, go back on promises depending on his moods, his whims, his needs. That was fine when he was little. But he needs to grow up now. We need to let him, help him, make him grow up. Here’s what I think: we’ve all spent so much time trying to make August think he’s normal that he actually thinks he is normal. And the problem is, he’s not.
High School
What I always loved most about middle school was that it was separate and different from home. I could go there and be Olivia Pullman—not Via, which is my name at home. Via was what they called me in elementary school, too. Back then, everyone knew all about us, of course. Mom used to pick me up after school, and August was always in the stroller. There weren’t a lot of people who were equipped to babysit for Auggie, so Mom and Dad brought him to all my class plays and concerts and recitals, all the school functions, the bake sales and the book fairs. My friends knew him. My friends’ parents knew him. My teachers knew him. The janitor knew him. (“Hey, how ya doin’, Auggie?” he’d always say, and give August a high five.) August was something of a fixture at PS 22.
But in middle school a lot of people didn’t know about August. My old friends did, of course, but my new friends didn’t. Or if they knew, it wasn’t necessarily the first thing they knew about me. Maybe it was the second or third thing they’d hear about me. “Olivia? Yeah, she’s nice. Did you hear she has a brother who’s deformed?” I always hated that word, but I knew it was how people described Auggie. And I knew those kinds of conversations probably happened all the time out of earshot, every time I left the room at a party, or bumped into groups of friends at the pizza place. And that’s okay. I’m always going to be the sister of a kid with a birth defect: that’s not the issue. I just don’t always want to be defined that way.
The best thing about high school is that hardly anybody knows me at all. Except Miranda and Ella, of course. And they know not to go around talking about it.
Miranda, Ella, and I have known each other since the first grade. What’s so nice is we never have to explain things to one another. When I decided I wanted them to call me Olivia instead of Via, they got it without my having to explain.
They’ve known August since he was a little baby. When we were little, our favorite thing to do was play dress up with Auggie; load him up with feather boas and big hats and Hannah Montana wigs. He used to love it, of course, and we thought he was adorably cute in his own way. Ella said he reminded her of E.T. She didn’t say this to be mean, of course (though maybe it was a little bit mean). The truth is, there’s a scene in the movie when Drew Barrymore dresses E.T. in a blond wig: and that was a ringer for Auggie in our Miley Cyrus heyday.
Throughout middle school, Miranda, Ella, and I were pretty much our own little group. Somewhere between super popular and well-liked: not brainy, not jocks, not rich, not druggies, not mean, not goody-goody, not huge, not flat. I don’t know if the three of us found each other because we were so alike in so many ways, or that because we found each other, we’ve become so alike in so many ways. We were so happy when we all got into Faulkner High School. It was such a long shot that all three of us would be accepted, especially when almost no one else from our middle school was. I remember how we screamed into our phones the day we got our acceptance letters.
This is why I haven’t understood what’s been going on with us lately, now that we’re actually in high school. It’s nothing like how I thought it would be.
Major Tom
Out of the three of us, Miranda had almost always been the sweetest to August, hugging him and playing with him long after Ella and I had moved on to playing something else. Even as we got older, Miranda always made sure to try to include August in our conversations, ask him how he was doing, talk to him about Avatar or Star Wars or Bone or something she knew he liked. It was Miranda who had given Auggie the astronaut helmet he wore practically every day of the year when he was five or six. She would call him Major Tom and they would sing “Space Oddity” by David Bowie together. It was their little thing. They knew all the words and would blast it on the iPod and sing the song out loud.
Since Miranda’s always been really good about calling us as soon as she got home from summer camp, I was a little surprised when I didn’t hear from her. I even texted her and she didn’t reply. I figured maybe she had ended up staying in the camp longer, now that she was a counselor. Maybe she met a cute guy.
Then I realized from her Facebook wall that she’d actually been back home for a full two weeks, so I sent her an IM and we chatted online a bit, but she didn’t give me a reason for not calling, which I thought was bizarre. Miranda had always been a little flaky, so I figured that’s all it was. We made plans to meet downtown, but then I had to cancel because we were driving out to visit Tata and Poppa for the weekend.
So I ended up not seeing either Miranda or Ella until the first day of school. And, I have to admit, I was shocked. Miranda looked so different: her hair was cut in this super-cute bob that she’d dyed bright pink, of all things, and she was wearing a striped tube top that (a) seemed way inappropriate for school, and (b) was totally not her usual style. Miranda had always been such a prude about clothes, and here she was all pink-haired and tube-topped. But it wasn’t just the way she looked that was different: she was acting differently, too. I can’t say she wasn’t nice, because she was, but she seemed kind of distant, like I was a casual friend. It was the weirdest thing in the world.
At lunch the three of us sat together like we always used to, but the dynamics had shifted. It was obvious to me that Ella and Miranda had gotten together a few times during the summer without me, though they never actually said that. I pretended not to be at all upset while we talked, though I could feel my face getting hot, my smile being fake. Although Ella wasn’t as over-the-top as Miranda, I noticed a change in her usual style, too. It’s like they had talked to each other beforehand about redoing their image at the new school, but hadn’t bothered to clue me in. I admit: I had always thought I was above this kind of typical teenage pettiness, but I felt a lump in my throat throughout lunch. My voice quivered as I said “See you later” when the bell rang.
After School
“I hear we’re driving you home today.”
It was Miranda in eighth period. She had just sat down at the desk right behind me. I had forgotten that Mom had called Miranda’s mother the night before to ask if she could drive me home from school.
“You don’t have to,” I answered instinctively, casually. “My mom can pick me up.”
“I thought she had to pick Auggie up or something.”
“It turns out she can pick me up afterward. She just texted me. Not a problem.”
“Oh. Okay.”
“Thanks.”
It was all a lie on my part, but I couldn’t see sitting in a car with the new Miranda. After school I ducked into a restroom to avoid bumping into Miranda’s mother outside. Half an hour later I walked out of the school, ran the three blocks to the bus stop, hopped on the M86 to Central Park West, and took the subway home.
“Hey there, sweetie!” Mom said the moment I stepped through the front door. “How was your first day? I was starting to wonder where you guys were.”
“We stopped for pizza.” Incredible how easily a lie can slip through your lips.
“Is Miranda not with you?” She seemed surprised that Miranda wasn’t right behind me.
“She went straight home. We have a lot of homework.”
“On your first day?”
“Yes, on our first day!” I yelled, which completely surprised Mom. But before she could say anything, I said: “School was fine. It’s really big, though. The kids seem nice.” I wanted to give her enough information so she wouldn’t feel the need to ask me more. “How was Auggie’s first day of school?”
Mom hesitated, her eyebrows still high up on her forehead from when I’d snapped at her a second earlier. “Okay,” she said slowly, like she was letting out a breath.
“What do you mean ‘okay’?” I said. “Was it good or bad?”
“He said it was good.”
“So why do you think it wasn’t good?”
“I didn’t say it wasn’t good! Geez, Via, what’s up with you?”
“Just forget I asked anything at all,” I answered, and stormed dramatically into Auggie’s room and slammed the door. He was on his PlayStation and didn’t even look up. I hated how zombified his video games made him.
“So how was school?” I said, scooching Daisy over so I could sit on his bed next to him.
“Fine,” he answered, still not looking up from his game.
“Auggie, I’m talking to you!” I pulled the PlayStation out of his hands.
“Hey!” he said angrily.
“How was school?”
“I said fine!” he yelled back, grabbing the PlayStation back from me.
“Were people nice to you?”
“Yes!”
“No one was mean?”
He put the PlayStation down and looked up at me as if I had just asked the dumbest question in the world. “Why would people be mean?” he said. It was the first time in his life that I heard him be sarcastic like that. I didn’t think he had it in him.
The Padawan Bites the Dust
I’m not sure at what point that night Auggie had cut off his Padawan braid, or why that made me really mad. I had always found his obsession with everything Star Wars kind of geeky, and that braid in the back of his hair, with its little beads, was just awful. But he had always been so proud of it, of how long it took him to grow it, of how he had chosen the beads himself in a crafts store in Soho. He and Christopher, his best friend, used to play with lightsabers and Star Wars stuff whenever they got together, and they had both started growing their braids at the same time. When August cut his braid off that night, without an explanation, without telling me beforehand (which was surprising)—or even calling Christopher—I was just so upset I can’t even explain why.
I’ve seen Auggie brushing his hair in the bathroom mirror. He meticulously tries to get every hair in place. He tilts his head to look at himself from different angles, like there’s some magic perspective inside the mirror that could change the dimensions of his face.
Mom knocked on my door after dinner. She looked drained, and I realized that between me and Auggie, today had been a tough day for her, too.
“So you want to tell me what’s up?” she asked nicely, softly.
“Not now, okay?” I answered. I was reading. I was tired. Maybe later I’d be up to telling her about Miranda, but not now.
“I’ll check in before you go to bed,” she said, and then she came over and kissed me on the top of my head.
“Can Daisy sleep with me tonight?”
“Sure, I’ll bring her in later.”
“Don’t forget to come back,” I said as she left.
“I promise.”
But she didn’t come back that night. Dad did. He told me Auggie had had a bad first day and Mom was helping him through it. He asked me how my day had gone and I told him fine. He said he didn’t believe me for a second, and I told him Miranda and Ella were acting like jerks. (I didn’t mention how I took the subway home by myself, though.) He said nothing tests friendships like high school, and then proceeded to poke fun at the fact that I was reading War and Peace. Not real fun, of course, since I’d heard him brag to people that he had a “fifteen-year-old who is reading Tolstoy.” But he liked to rib me about where I was in the book, in a war part or in a peace part, and if there was anything in there about Napoleon’s days as a hip-hop dancer. It was silly stuff, but Dad always managed to make everyone laugh. And sometimes that’s all you need to feel better.
“Don’t be mad at Mom,” he said as he bent down to give me a good-night kiss. “You know how much she worries about Auggie.”
“I know,” I acknowledged.
“Want the light on or off? It’s getting kind of late,” he said, pausing by the light switch at the door.
“Can you bring Daisy in first?”
Two seconds later he came back with Daisy dangling in his arms, and he laid her down next to me on the bed.
“Good night, sweetheart,” he said, kissing my forehead. He kissed Daisy on her forehead, too. “Good night, girlie. Sweet dreams.”
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