Normal

by Magdalena Newman

  Just before Nathaniel goes out, his body fights it for a split second. Part of the reason I’m never in the OR is that Russel doesn’t want me to see this part. It’s hard to watch your son’s body be taken over by drugs. Every surgery is risky, and it’s always scary.

  Once Nathaniel is under, Russel lays him down, takes off his hearing aid, walks out of the OR, and collapses. But I only know this because Russel has told me. By the time he gets back to the family waiting room, I am already completely out. It doesn’t matter how small or uncomfortable the chair is, I fall dead asleep the minute Russel carries Nathaniel away. Sleeping is how I deal with stress, and for the most part it’s a good coping strategy: It’s hard to show weakness when you’re asleep! I don’t get up to eat. I don’t need to go to the bathroom. No matter how long the surgery lasts, there I am, covered in blankets, sleeping through the entire thing until Russel shakes me to tell me the doctor is on his way to tell us how it went.

  Nathaniel: I always wake up from surgery angry. It must be a side effect of the anesthesia. Of course, I can’t hear because they’ve taken out my hearing aid, and I’ve never liked that. But instead of politely asking for it back, I’m full of rage. Once I punched a nurse who tried to hold my hand. I’ve been known to try to rip out an IV. Even though I always have to stay in the hospital to recover, and I know this, I still wake up saying, “I just want to go home. I don’t want to be here anymore.” Five minutes later I’ve calmed down and am ready to move from the recovery room to a patient room, usually on a different floor.

  Dr. Cotton supervised, and Dr. Johnson performed most of the surgery. They went very slowly, a millimeter at a time, watching everything they were doing on a screen. We thought it would take six hours, but it ended up taking eighteen. The stamina of the doctors was incredible.

  We had hope that finally getting his nose open would mean we could take the trach out, but we knew it wasn’t likely. His breathing did improve but his airway wasn’t large enough to let in enough air. Even so, there was now a light at the end of the tunnel. Dr. Johnson promised us it was the first step of a long journey, still cause for celebration.

  We now had to be vigilant about preserving the hole the doctor had made. As was the plan, Nathaniel needed a number of smaller follow-up surgeries to repeatedly clear away the scar tissue, so we returned to Cincinnati every four weeks at first, then at longer intervals. It was a family priority.

  At our final appointment in Cincinnati, Dr. Johnson told us he had some news to share. He had been new to the hospital when we’d first met him and had helped Nathaniel throughout this latest medical adventure. He announced, “I’m moving to Seattle Children’s hospital.” We thought that meant that when Nathaniel had his next surgery, Dr. Johnson wouldn’t be part of it. Little did we know that three years later this doctor would become a huge part of our lives.

  part three

  wonder

  20. a “real-life” auggie

  In February of 2012, when Nathaniel was eight, the book Wonder by R.J. Palacio was published. Wonder is a novel about a ten-year-old boy named Auggie Pullman who has craniofacial issues very similar to Nathaniel’s. The book begins when, after having been homeschooled through many surgeries, Auggie goes to his neighborhood school for the first time in fifth grade. Told from Auggie’s perspective and that of the people around him, the book is funny and moving and real. It has, at its core, a message of acceptance and kindness that does the miraculous: It really stays with kids.

  Russel read Wonder in one day and found the similarities to our lives uncanny. The parallels were not just familiar—it felt like the author knew our lives. He immediately called our friend Nurse Pat to tell her about this amazing book.

  Pat said, “Are you kidding me? The author is sitting across the room from me right this minute.” Apparently, when R.J. was researching the book, she had visited the medical center to meet with experts on Treacher Collins. The first thing she saw when she walked through the door was a huge picture of Nathaniel hanging on the wall, so she’d known about Nathaniel for a long time. Right after that phone call, Pat put R.J. and Russel in touch.

  I knew, vaguely, that Russel was emailing with R.J., but before I could give it much thought, I had an unpleasant surprise.

  I had gotten certified to teach the Mossa fitness program at the studio in Connecticut, but we moved back to North Carolina before I had the chance to put my training to work. Luckily, Mossa is used in health clubs around the world, including in Charlotte, so I finally started working as an instructor. I led a Group Power workout. The instructors wore shirts that said “Power,” which spoke to me.

  For the first time in a long time, I was the center of attention. In a faraway lifetime, I had been a performer. As a pianist, I had been accustomed to having people watch and listen to me, and I liked it. Attention in the form of the stares Nathaniel drew was unpleasant, but to my surprise, I discovered that I had missed being center stage. I quickly became one of the more popular instructors, with a devoted group of followers. In class, between exercises, there was very little time to talk personally, but I tried to squeeze in bits of inspiration: “You guys, if you can believe it, I was in a wheelchair three years ago. I had a fractured spine. I found fitness, and I feel better mentally and physically. I’m stronger than I’ve ever been.” My students saw me as proof that anyone could get into shape. Over time, they emerged from corners of the room to share their own stories.

  Mossa creates a program of specific routines that instructors follow internationally, and they send out the new routines via video. The way I’ve always motivated myself is by setting high, if not impossible goals. My long-term goal for Nathaniel was to get rid of his trach. The ambitious goal I set for myself was to become one of the video instructors. When there was a call for applicants, I submitted a video of myself teaching class. I was really excited when I was named a finalist in their search. This was exactly what I needed now that the boys were in school and stable—a part of my life that was just for me.

  I was filming another video of myself teaching class for the next round of the competition when something went wrong. I started to squat and my body locked; I couldn’t go lower. I said, “You know what guys? Something is wrong. I think I pulled a muscle. I can’t squat, but you should go all the way down.”

  It was the strangest thing, and it had come on suddenly, like a snap of the fingers. At the end of the class I limped out, bewildered.

  My doctor’s office happened to be around the corner from the gym so I went straight there. He took an X ray, then showed me that where the ball of my hip was supposed to be, there was only a shadow.

  “How are you walking around?” he asked.

  “How am I missing a hip?” I answered.

  It turned out that the cancer tumors had caused nerve damage, which was why I wasn’t feeling any pain, and I had avascular necrosis—there wasn’t enough blood flow to my hips so the bone tissue in one of them had died. They told me it was a somewhat rare side effect of the steroids in the chemo cocktail I’d had six years earlier. Lucky me!

  I needed a total hip replacement immediately. Like, yesterday. The doctor said that if I happened to fall, I would end up in a wheelchair for the rest of my life. I went from teaching a workout and lifting weights one day to bedrest the next—no walking allowed.

  I was angry. I was only thirty-four. I’d just beaten cancer and found the joy of fitness. So much for my dream of becoming a video instructor.

  “You’re not going to have a hip replacement done by someone mediocre,” Russel said. “You need to go to the best doctor.” We’d had such a bad experience with Nathaniel’s surgery in North Carolina that we were irrationally gun-shy about all the local doctors, many of whom were surely top-notch. We decided I would have the surgery in New York, where if the doctors were counting on Jesus to guide their hands, they knew better than to say so.

  We found a surgeon recommended by our now numerous medical connections. The operation wou
ld cost $20,000 in cash that we didn’t have, a huge financial burden. We didn’t indulge in luxuries (except for Nathaniel’s toy jeep), and Russel worked hard at his job. But for all this working and saving, we were broke. People who suffer physically get the special bonus gift of financial suffering.

  We made plans to meet R.J., the author of Wonder, when we were in New York to see the hip surgeon for the first time. Of course, Russel had cried the whole way through the book, but I hadn’t read it yet. Before we left home, I’d tried to start it, but the truth is that I picked it up, read a few pages, and knew I wasn’t ready. Dealing with Nathaniel’s Treacher Collins was a daily struggle. I was still so deep in it that I wasn’t ready to reflect on it. The book was too close to home.

  The New York doctor affirmed the no-longer-shocking news that my hip was shot. We scheduled the surgery. Like the first doctor, he didn’t want me walking around at all.

  So, when I crutched myself into the cute West Village restaurant to meet R.J., my mind wasn’t on Wonder. I was mentally preparing for my own big surgery, scared and full of self-pity. But R.J.’s warmth and kindness was captivating. She told us what inspired her to write the book. She and her kids had gone into an ice cream shop in Brooklyn and had seen a child with Treacher Collins. Her younger child had a bad reaction. Unsure how to handle the situation, she hurried them away from the store.

  I figured out right away that the child they’d seen was Emily. “I know that family,” I said. “I know Emily and her mother, Jenna. Jenna helped me cope when I was first digesting Nathaniel’s situation. She’s the most amazing person I’ve ever met.”

  I told R.J. that her child’s reaction was understandable and that it had even been hard for me to meet Emily. She said, “I’m still not okay with my reaction. It wasn’t my child’s fault. I was the one who pulled him away.”

  I thought, This woman is brave. Talking to me, the mother of a son with the same condition, R.J. didn’t make excuses. She took responsibility for her actions.

  “I couldn’t let go of what I’d done,” she told me. “I felt like I owed this mother and this girl an apology, so I wrote it in the form of the book.”

  Sure, her hurried flight from the ice cream store hadn’t been ideal, but it wasn’t anything new to me. I saw it all the time: the shocked faces of people, their unfiltered reactions. Finally, one of them had done something about it! R.J. was humble, honest, and pure. She wanted to change, and by writing Wonder she did something to help millions of people change. It was beautiful.

  At that time Wonder was newly published, and R.J. told us that so far it had sold 1,600 copies, not an enormous number. She was giving presentations at schools and libraries, trying to spread her message through story. In her meetings with students, they were very curious about what Auggie looked like. R.J. told us that Nathaniel was in her head when she created Auggie, remembering the photo she’d seen of him when she first walked into the hospital. But she didn’t know anything else about him, so she was struck when we told her how many details of our lives she’d captured in her book. Later, when Nathaniel started joining her for appearances at schools and other places, she would say, “Nathaniel Newman is Auggie Pullman come to life.”

  It was easy to connect with R.J.—she never felt like a stranger—but at that first meeting we had no idea how important the book would be to us, to the craniofacial community, and to a whole generation of kids.

  Forty-eight hours after hip replacement surgery they throw you out of the hospital. To our relief, myFace, the organization that helps kids with craniofacial differences, stepped in. They own an apartment in New York City where kids visiting doctors can stay free of charge. It happened to be empty, so they let me recover there for three extra days.

  There’s a risk of blood clots if you fly too soon after surgery, so we drove back to North Carolina. I was nowhere near ready for the trip, but I was antsy to get home. We had left the kids with my sister Agnieszka, a physical therapist, and Russel’s mother was also there to help out. But we’d already been gone for five days, which was four days longer than we’d ever both left the children at the same time. I had only been apart from Nathaniel a handful of times in his eight years of life, and even then I had the comfort of knowing Russel was home with Nathaniel.

  I couldn’t sit up in a chair yet, much less in the passenger seat of a car for a nine-hour drive, so Russel folded down the rear seats of our SUV and created a hospital bed for me using an air mattress, a sleeping bag, and some pillows. After several hours of driving, we were both very hungry and in need of a bathroom break. Russel pulled into a strip mall with a Starbucks to buy sandwiches, backing the truck into a space right in front of the outdoor cafe. When he opened the hatch to hand me a sandwich, all the people drinking their coffees turned as one to stare at us. There I was, woozy and pale, propped up in our makeshift mini-ambulette. Who knows what stories they made up in their heads to explain why a man was feeding a clearly drugged-up woman who was lying, incapacitated, in the trunk of his car.

  Eight weeks later I was back on stage, teaching aerobics. My glute muscle was entirely gone—it looked like I had only one butt cheek—but I was a stronger instructor for the experience. I taught a class for all fitness levels, and again I told them what I’d been through, the list now a tiny bit longer: “I wasn’t allowed to exercise growing up because I was a piano player and the teachers didn’t want me to injure my fingers. Nowadays I love to feel strong, but my body’s broken. My spine was cracked. My hip bone disintegrated. For a while I had a tough time doing cardio because I had cancer tumors pressing against my heart. My body isn’t perfect and strong, but it has carried me through hell.”

  I wanted my students to think, If she can do it, I can too.

  21. The Boy From The Wonder Book

  Nathaniel had become a spokesperson for myFace, and Russel was on the board, so we frequently ran into R.J. at craniofacial events. Though fictional Auggie and real-life Nathaniel had a lot in common, there was one way in which they were very different: Auggie wanted to hide his face. He often wore a space helmet, and Halloween was his favorite holiday because in his mask he was just like everyone else. So far—and he’s fifteen, so things are looking pretty good—Nathaniel has never wanted to hide his face. He’s always known he is different, and people have always stared or done a double take when they first see him. Nonetheless, he is proud of who he is, and he wouldn’t want Treacher Collins taken away from him. It’s part, but not all, of who he is.

  One year, close to Halloween, Russel took the boys to get frozen yogurt in Charlotte. Nathaniel was about eight. They were sitting outside, eating the yogurt, when a man—a fully grown adult man—came up to Nathaniel and said, “Wow, where did you get such a cool mask? I wish I had a mask like that for Halloween.” His tone was mocking and he looked proud, as if he’d just made the funniest joke in the world.

  Russel saw red. As he started to erupt, Nathaniel looked that man in the eyes, smiled, and said, “It’s not a mask. It’s my face!” Then he turned back to his frozen treat and devoured it with passion. A few nights later, he trick-or-treated with more energy and enthusiasm than any ten kids could’ve summoned.

  I take some credit for this attitude. When I was growing up, I read a book about the Polish piano prodigy Frederic Chopin. When he first performed publicly, at age eight, the audience that witnessed his genius went wild. His mother, seeing that he was overwhelmed by the adulation, didn’t want him to think of himself as such a standout. She told him, “You are wearing a beautiful suit. They can’t get over how handsome you are in this suit.”

  I remembered that, and whenever Nathaniel asked, “Why are they staring at me?” I wouldn’t say, “Because your face is unusual.” I’d say, “You’re handsome. People are fascinated by your face. Everybody else looks like each other, but your eyes are different, you don’t have cheekbones, and you have almost no ears. They’re curious, and they wonder, ‘Where did this special boy come from?’”

&n
bsp; At night, when we were brushing teeth, I’d stand in front of the mirror with him. “Look at you, what do you think about your face?”

  “Nothing.”

  I said, “Touch your eyes, they’re beautiful and big. Look at your hair, it’s lovely.”

  I’m sure some people would expect me to say to him, “Let’s talk about what happened today. How did that make you feel?” when there was an unpleasant incident. But most of the time I didn’t mention it. Instead of assuming he was upset and helping him talk about his thoughts and feelings, I chose to model that it was no big deal. I didn’t expect him to be injured by other people’s bad behavior and ignorance, and I didn’t want him to dwell on it.

  The only person who hurt him tremendously was Liz, the neighbor who had told her son not to play with Nathaniel. Then, the only time I saw my son crying because of someone else’s cruelty, we talked about it.

  “I know it hurts. You can’t change that woman, and we can’t either. We tried talking to her, but she didn’t listen, and I think she’s making a big mistake. But you have other friends, and other people don’t decide who you are as a person. Make sure you’re a good person in your heart, and, if you can, forgive her. She’s insecure, and you shouldn’t take it out on yourself.” It didn’t seem to help Nathaniel much in that moment. He couldn’t even catch his breath—he never cried like that.

  It’s hard for me to remember how I used to talk to people with visible disabilities before Nathaniel, but now I am completely open and maybe even too friendly because of the connection I feel with them. Once at Lululemon, I met a temporary employee, a young guy with a huge scar across his face. I said, “I know we just met, but do you mind explaining what happened to you?”

  He smiled immediately and said, “Oh my gosh, you are the first person who has actually asked. There’s a story behind this scar, but if nobody asks, I never get a chance to tell it. I was in a terrible car accident. I’m happy to be alive, and my scar is a reminder of how lucky I am.”