فصل 07

7

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.