Normal

by Magdalena Newman

  Then something changed. A tipping point. R.J.’s book had become a bestseller. Strangers on the street started saying to Nathaniel, “Oh, have you read Wonder? You look like the boy from that book.”

  Nathaniel or I would answer, “We did read the book, and we know the author.” These seemingly trivial exchanges marked something truly miraculous. Part of why seeing Nathaniel for the first time made people uncomfortable was that they didn’t know what to make of him. What was going on with this kid? Was he okay? What should they think of him? How should they react? They didn’t know what questions to ask to help them understand him. Maybe things changed because they now had a picture of Auggie in their heads, or maybe just seeing a boy whose face was different sparked the connection. Either way, it was to Wonder’s credit.

  Practically overnight, the book gave what seemed like an entire generation of kids a way to process Nathaniel’s face and the idea that there was a real, likeable person behind it. Obviously, this wasn’t just about Nathaniel. It applied to other kids with Treacher Collins, and anybody with a craniofacial condition. It turned out that brilliant blue-jacketed book and its message was all those kids ever needed to understand my son. Nathaniel still got stared at, but not as often as when he was little, and these stares were different. Kids were curious, but they didn’t react fearfully and run away. Parents were now more willing to come up and ask me questions.

  In Reno, when Russel and Nathaniel wrote the letter introducing Nathaniel to his classmates, it said, “You’ve probably read the book Wonder. That book is about a boy who is just like me.”

  Wonder didn’t change us, but it dramatically changed how other people approached us, and in that way, it changed our lives. Wonder made the world feel like a friendlier place.

  Around Thanksgiving of 2014, just before we left New Jersey for Reno, Russel and R.J. talked. She mentioned that there was going to be a movie of Wonder. They already had a director and a screenwriter, and she had proposed that Nathaniel play the main character. “He’s my real-life Auggie,” she said. “That’s how I picture him.” The producers flew Nathaniel from Reno to LA and gave him a script with a couple of scenes to practice.

  Nathaniel: The audition was kind of like taking a test. I memorized my lines. I tried to put feeling into it without overacting or underacting. But there’s also improvisation; it’s not the same as just taking someone else’s words and character and making them come to life. At one point I got confused. We were doing a scene where Auggie gets kicked out of the library. (I don’t think the scene ended up in the movie.) The woman playing the librarian told me to leave. I wasn’t prepared for that—I didn’t know if she was saying her line, or if she really wanted me to get off the stage. I figured they didn’t actually want me to leave, so at first I just stood there. She told me to leave again, this time more harshly, so I walked out of the room. Then she asked, “Where are you going?” Yeah, I wasn’t a pro. After it was over, everyone told me I’d done a fine job—they all knew I wasn’t coming in as a professional—and they told us they were a long way away from making final decisions about casting.

  Wonder was now being taught in schools nationwide. At his new school in Reno, Nathaniel’s teacher told someone in her book group that she had “a Wonder kid” in her class. Word spread from there to Elizabeth Vargas, a host on the ABC news show 20/20. Elizabeth was interested in doing a segment with our family about Nathaniel and wanted to meet us.

  The next time Russel went to New York on a business trip, he had lunch with the 20/20 producers and Elizabeth. They went to a fancy Midtown restaurant that was the unofficial ABC cafeteria. (The movie and 20/20 both fell somewhere under the Disney umbrella.) As they ate lunch, various onscreen personalities came over to greet Elizabeth.

  Elizabeth wanted to explore a part of our story that wasn’t central to Wonder: the challenge of giving a kid with severe differences the opportunity to have a normal life. Russel was sold, and we agreed to do some preliminary interviews with the producers so they could get a sense of us as a family. We’d done something like this before: a short documentary for the National Geographic show Taboo. All of us assumed that 20/20 would do something similar, a short “slice of life” profile. Which is what they would have done . . . if our lives had gone on as they were.

  part four

  the big one

  24. a unique form of torture

  God works in mysterious ways. In 2015, not long after we moved to Reno, we decided that the best medical team for Nathaniel was conveniently located in Seattle. Some of our New York team was retiring, and they told us that Dr. Richard Hopper at Seattle Children’s was the best in the world. Most compelling was that Dr. Hopper was pioneering a new surgery that might allow Nathaniel to get rid of the trach. For good.

  In a stroke of good fortune, Dr. Hopper was working with Dr. Johnson, who already knew Nathaniel from Cincinnati. When Dr. Johnson told us he was moving to Seattle, we’d thought we’d never see him again. We’d had no idea he’d end up working with Dr. Hopper to develop a new surgical approach to help people like Nathaniel breathe normally.

  I had been so anxious about moving to Reno, so far from NYU and the doctors who had shepherded Nathaniel his whole life. But God brought us to the West Coast, and that was exactly where we needed to be: an hour-and-a-half direct flight from Seattle Children’s hospital.

  The doctors in Cincinnati had opened Nathaniel’s nasal passage, but he still couldn’t take in enough air without the trach. If this new procedure was successful, Nathaniel would finally be able to breathe like everyone else. myFace did the math for us. He was eleven years old, and he had already had fifty-five surgeries totaling $1.7 million. Removing the trach was something we’d been striving toward his whole life. To be able to go to school without a nurse. To be able to take a bus. To play without fear of dislodging it. To shower by himself instead of being bathed by me. To swim with the other kids. It was the biggest step toward normal we could imagine for him (and, frankly, for us).

  Dr. Hopper said, “You’ll hate what I’m going to tell you; it’s draconian.” He and his team planned to address not just Nathaniel’s jaw—which we had already expanded through five distractions over the years—but the structure of his entire face. It would take several preparatory surgeries, and then the biggest one was a whopper, not just because of the eleven-hour surgery itself, but because of what came after.

  The follow-up treatment, which would expand his face, was not very different from what you would invent to torture your worst enemy. (Sure, when you torture your worst enemy, the goal usually isn’t to improve his breathing, but otherwise this was exactly the same.) After the surgery, Nathaniel would have a heavy framework (we called it the “halo” or the “cage”) around his head with sixteen screws that were mounted to his face in various places. Five of those screws needed to be turned one or two millimeters every day. He would wake up from surgery with his eyes sewn shut, his jaws wired closed, a g-tube in his stomach, and the halo on his head, and he would face months of being mostly confined to bed. In the beginning he wouldn’t be able to eat, see, or talk, which pretty much eliminated almost every way a bedridden person might keep himself sane during the long weeks of recovery.

  In the end, if the surgery was successful, Nathaniel’s face would be shaped differently. He would still look like himself, Dr. Hopper promised us, but there would be room for him to breathe. He explained, “The entire process, including six surgeries, will take a year to a year and a half, but we might be able to get the trach out.” Nathaniel would be only the third child to ever have this procedure. It was as if the doctors, among themselves, had said, “If we can fix Nathaniel Newman, we can fix anyone.”

  The description of the treatment was not a pleasant thing for a parent to hear. I wondered how it was sounding to the eleven-year-old would-be patient. This wasn’t something we could inflict on our son against his will. It was barbaric. That was why we’d brought Nathaniel with us to Dr. Hopper’s office to hear
everything he had to say. “You’re doing this because we said so” wouldn’t fly. He couldn’t wake up surprised to find his head in a vice. He had to know what he was getting himself into, and he had to be on board.

  When the doctor finished describing this terrible but potentially miraculous plan, Russel and I looked at our son to see his reaction. Nathaniel was in the corner of the room, with a sheet of paper taped to his chest. He’d colored the paper red, and there were big holes stabbed through it, as if he’d been riddled with bullets.

  “What are you doing?” we asked him. I think we both expected him to say, “This is what you want to do to me. You’re going to destroy me.”

  Instead, he said cheerfully, “You’re not going to believe it. We’ve been overrun by monkeys, and they all have muskets.”

  Nathaniel had always found his way through the pain and suffering, and this was exactly how he did it. Monkeys and muskets one day, a superhero or two another, these characters made mayhem in his head, their comic book battles distracting him from bad news, boredom, and pain.

  Russel pressed him. “Nathaniel, this is serious. It’s going to suck. Did you hear the details? Do you have any questions? What do you think?”

  He said, “Do I get to miss school?”

  Russel said, “Yes, you’ll miss three months.”

  He gave me a double thumbs-up. “Awesome. Let’s do it.”

  Nathaniel: I was bored. To be honest, I’m always bored when doctors are talking, but my parents make me turn off my iPad when there’s “stuff I need to hear.” So I had asked a nurse for a marker. The one she gave me happened to be red. While I “listened,” I drew a bullet hole on a piece of paper and taped it to myself. Did it mean I had a death wish? No! Occasionally I draw laser beams going through people. This doesn’t mean I’m violent or insane. It just means I like the way I draw laser beams.

  For my whole life I’d known my trach was a danger to my health and a huge inconvenience. But it was also all I’d ever known. It felt normal to me. Imagine if someone came up to you and said, “Wow, you have to go to the bathroom several times a day? Your body doesn’t just take care of that on its own? I feel sorry for you; that must be gross and annoying.” And when you looked around, you saw that nobody else had to interrupt what they were doing to take a bathroom break. You were the only one. Nobody else even had bathrooms in their houses, so you had to carry around special equipment to handle your unusual needs.

  Then you might say, “Okay, I get it. Their bodies work better than mine.” You would understand that idea, but it would still be hard to actually know what it felt like for your body to work just like theirs, what it felt like to be “normal.”

  Every superhero has a weakness. Mine was my trach, and one of the worst things about it was that I couldn’t swim. Or the doctors told me I couldn’t swim. In Reno, at the neighborhood pool, I decided I would find a way to go underwater. I pushed the trach back and tightened the cap as tight as I could. I’m gonna try this, I thought.

  “Dad,” I said, “I’m going under water.”

  Dad said, “You gotta risk it to get a biscuit.”

  My mom isn’t quite as open to breaking the rules. She’ll say, “You shouldn’t do that,” and then she’ll watch, worried, ready to jump in and save me, but she doesn’t go so far as to make me stop.

  So I ducked my head under. It was only for a second, but when I came up, I was like, Yeah, I did it! Whoa! I felt happy and proud. I was being brave. I didn’t care what the doctor would say . . . as long as he didn’t know.

  I said, “Dad, I went under water and I was fine.”

  “You did?” he said. Then I showed him.

  Even though I could only do it for a second, I liked being underwater better than being above it. I ducked beneath the surface over and over again. The only downside of this version of swimming was that . . . it didn’t really work. I couldn’t stay under more than a second, and water got into my trach once or twice when the band didn’t stay as tight as it needed to be. Also, this act of bravery guaranteed that I would need to change my trach tie because it got soggy. So, yeah, the reality was that I still couldn’t go under water. But at least I knew I had tried and gone as far as I possibly could.

  When I said, “Awesome! Let’s do it!” I was acting like the surgery was no big deal, but I really did like the possibility of being able to swim farther, deeper, for longer, without an adult hovering nearby. And though it was hard to imagine, I knew that if I didn’t have a trach, so many of the medical issues I dealt with every day would just . . . disappear. I wouldn’t get infections. I wouldn’t worry about someone bumping into the trach. My parents wouldn’t have to change the tie that held it in place. I wouldn’t have to get a new trach every two weeks. The trach cap wouldn’t pop out and fly down the school hallway when I sneezed, like it once had done in front of my whole class. I liked what the surgery promised, and I wanted to have it and for it to be successful, but I didn’t want to get my hopes up.

  The two children Dr. Hopper had performed the surgery on were a baby and an eleven-year-old girl named Izzy. At one of those first meetings with the team in Seattle, Dr. Hopper told us that Izzy and her family were in the hospital for an appointment that day. He said, “Let me ask them if they’re willing to talk to you guys. When you go to lunch, I’ll text you.” But as we were leaving his office, we ran into them in the waiting room. Izzy had the cage on her head. It looked very dramatic, but she was smiling.

  Russel said, “Hey, this is Nathaniel, he’s going to have the same surgery that you had.”

  They were gentle, kind, and warm. Izzy couldn’t talk with the cage on, but she was clearly in good spirits. Her mother confided to me, “This is the hardest thing we’ve ever done, but I think it’s going to work.” Izzy’s breathing had improved. Not long after that, she would successfully have her trach removed and be able to eat for the first time in her life without using a g-tube. This was the best news we could imagine.

  Plans for Nathaniel’s surgery were solidifying, and the movie people still hadn’t told me if they wanted Nathaniel to play Auggie. Getting the role was a long shot, but I felt I had to let them know our schedule just in case. Walking the dogs one day, I picked up the phone and called Todd Lieberman, the producer we knew best.

  “I realize that you’re putting a lot of money into this movie and your schedule doesn’t revolve around one boy,” I said, “but I don’t live in your world. I’m just a mom, and I wanted to let you know that we’re scheduling a surgery that will change Nathaniel’s life. It’d be amazing if Nathaniel or another kid with Treacher Collins could play Auggie. It would be authentic, and it would bring great exposure to the craniofacial community. We’re here to help if there’s anything we can do, but this surgery is our priority.”

  Todd thanked me and told me the movie was already moving ahead. He then said they had someone in mind for the role.

  A couple days later Todd called Russel. He said, “We got the kid from Room to play the role. Jacob Tremblay. He’s a great actor.” We hadn’t seen Room, but Russel and I watched it that weekend. During the movie we kept looking at each other and saying, “Wow, this kid is amazing. He’ll be so awesome playing Auggie.” We were blown away.

  The next time I talked to Todd I told him he’d made a wise decision. Sure, it would have been great to give the part to someone with a craniofacial condition instead of a “normal” person wearing a prosthetic and makeup. But their goal was to make an amazing movie, and the more successful they were, the bigger a spotlight would shine not just on the craniofacial community, but on R.J.’s universal message of accepting difference and choosing kindness.

  In preparation for the big surgery, we flew up to Seattle every two to three months for testing and procedures. We scheduled it for March of 2015, expecting the worst part to be the first three months at least, during which Nathaniel would be wearing that heavy halo.

  One day about four months before, right around Thanksgiving, I was
feeling anxious about the surgery. I shut down when I get anxious, so since the kids were at school, I was lying in bed with the dogs, reading a book. At 11:15 I heard the front door open. The dogs jumped off the bed, excited, as Russel walked in, a weird sarcastic smile on his face.

  “What are you doing home?” I asked.

  He said, “I just got fired.”

  I figured he was joking. “You’re not feeling well?”

  “No,” he said, “No, this asshole fired me. He called me in and said, ‘It’s been great having you. The board has decided to go in another direction. We’re letting you go.’”

  We had only been in Reno for one year. Russel had never been fired—he’d never even gotten a negative review. In fact, he’d just been given a raise. He reminded his boss what was going on with Nathaniel. How could they fire him thirty days before Christmas, and four months before his son went through the biggest surgery any kid could have?

  The COO of his company said, “Yeah, I know it’s hard. But we’re giving you six months’ severance and a year of health insurance.”

  Now, being a salesman, Russel had a pitch ready for me. “God smiled on us,” he told me. “I’m getting paid for six months, and I can focus on Nathaniel full time.”

  I felt a line of electricity radiate from the top of my head, down through my face, to my throat, and all the way to my stomach, shocking me inch by inch. I started hyperventilating; I was having a panic attack. “What are we going to do now? I can’t believe this. What kind of luck is this? We lost Coco. We built a house. We have a mortgage. Nathaniel’s having surgery. We can’t live without health insurance!”