Normal

by Magdalena Newman

  The best change came the first time I beat Jacob in a boxing match. We like to box on our trampoline, but since it would have been bad if he punched me in the trach, he was never allowed to hit me above my shoulders. That made it kind of boring, plus I couldn’t win because he easily blocked my punches. I’d only ever won once before, on a glorious wet, slippery day. But this time, I somehow made him slip and trip, and there was no way he could claim that his ability to fight had been restricted. At the time, he admitted I won, though later he said that he let me win. I just said, “That’s right kid.” I’m pretty sure I will win our next match too.

  I swam all that summer, sometimes at Beaver Lake and sometimes at my cousin’s pool. At the pool, I liked to go down to the bottom of the deep end and push off. It was exciting to be wearing my goggles and holding my breath—my normal breath, the air that came in through my nose—then going under-water for as long as I wanted. My life didn’t change when I got rid of the trach; I was still me. I guess you could say it was kind of like having a broken leg your whole life and then finally getting the cast off.

  Nathaniel is blasé about the changes in his life, but, as his mother, life changed dramatically the day his trach went away. After thirteen years, I no longer had to do all the things that were required to take care of this foreign part of his body. We had a closet full of supplies that I would never need again. I donated some of the sealed boxes to myFace, hoping there wasn’t a squad of cockroaches hiding within.

  This feels strange to admit, but on the top shelf of the laundry room, where nobody goes but me, I still have a bag containing the stuff he needed to have at school: the ambu bag, containers for the suction pump, suction catheters, a hose for the pump, a spare trach, and antibacterial soap. The ambu bag, which was so critical, is now getting dusty on the shelf. It doesn’t make sense to keep these things, especially now that they can’t even be attached to Nathaniel, but I can’t seem to let them go. They were my lifelines for so long, and deep down I guess it’s hard to accept that I’ll never need them again.

  Another way in which our lives changed was that Nathaniel could now shower on his own. That hadn’t been an option with the trach, and I’d wondered what we’d do when he was at the age when he’d want privacy. (What teenager would want to shower with his mom helping him?) Now I no longer had to be there for him. I could wash dishes or drink a cup of tea while he was showering. It was another milestone to check off the list.

  At thirteen years old, he had to learn how to wash his own hair. Before he went into the bathroom, I instructed, “Pour some shampoo into your hand, massage it into your hair and scalp, then rinse.” At first he wasn’t used to giving the top of his head a good scrub—I’d always had to be gentle, washing his hair section by section, moving very slowly so the water didn’t drip into the trach. Letting go of worrying about the shower was difficult for me, even though there was literally nothing bad that could happen. Still, I couldn’t kick the habit of knocking on the door to ask if he was okay.

  Life with a hole in your neck is dangerous. All I ever wanted was for my children to be safe. The effort required to keep him safe on a daily basis was constant. Now he is as safe as anyone else.

  We allowed Nathaniel to do “risky” things like playing at the playground, going to the beach, and riding a bike, never forgetting that his first craniofacial surgeon, Dr. McCarthy, had told us to make his childhood as normal as possible. Not a single bone was ever broken, and he had the biggest life he could within his constraints. I was happy that he was alive, and that the trach helped him live. But I was happier without the extra worries and stress.

  Nathaniel started eighth grade after his first summer of “freedom.” Jacob was starting sixth so they were both in middle school, the first time they had been in the same school in a while. Jacob, now my eyes and ears, came home and said, “Mom, Nathaniel’s been chewing on his sleeve. Can you tell him not to do it?” Or “I saw him at lunch. He looks like a slob.” Although he would never judge a kid who was different, Jacob wants Nathaniel to fit in as best he can, to be “cool.” Nathaniel, on the other hand, doesn’t care. He’s a minimalist, which is a nice word for lazy. He still won’t tie his shoes because it’s too much work—he’s literally been wearing Crocs and socks for about six years. I bought him $85 Timberland boots that Jacob was coveting, but he won’t wear them because you have to tie them.

  Nathaniel said, “You’re trying to make me look cool, Mom. I don’t want to look cool. I’m fine with whatever I’m wearing. I don’t need clothes to feel better about myself.” That was his excuse. Even if the real reason was pure laziness, it was hard to argue with that.

  Jacob chimed in. “Nobody wears Crocs anymore. You’re in eighth grade.”

  But Nathaniel said, “I don’t care, Jacob. Mind your own beeswax.”

  For Halloween that year, Nathaniel was Vegeta, a character from the Dragon Ball manga series. He went to school in costume. Jacob reported that most of the eighth graders chose not to join the Halloween parade in the gym, during which everyone had a chance to take a solo moment up on the stage, or they ran on stage and then quickly ran off. But Nathaniel took his turn cheering, dancing, and hamming it up. No one else had the guts to go all out, but Nathaniel didn’t care what anyone thought, and you could tell everyone was happy for him. Jacob told us his brother was smiling ear to ear.

  I thought back to all the school plays Nathaniel had been in and how happy he was to be on stage. He had played the troll in “The Billy Goats Gruff” and a bully in another performance. In choir concerts he liked being front and center. I guess he inherited the pleasure I get in being seen and heard.

  That October, when my parents came to visit, I took them to see the Grand Canyon. Jacob came too, but we didn’t want Nathaniel to miss any more school, so Russel stayed with him. We also stopped in Las Vegas, where I surprised them with tickets to see David Copperfield. In Poland, we had watched his shows on TV with great amazement, so my parents were delighted.

  We sat right by the stage. Just as the show was about to start, a side door opened and a woman came over to us with champagne in flutes and chocolate-covered strawberries. There was a note on the tray from Russel. It said, “Magda, you are cancer-free. The doctors just called and your scans came back clean.”

  Everyone in the theater could see us receiving this hand-delivered treat. For my parents, who are from such a small town in Poland, being the center of attention for a moment was a spectacular, over-the-top way for them to receive the best news imaginable. They blushed, uncomfortable but happy. I’m sure they’ll never forget it—I know I won’t.

  33. The “Real” Wonder Boy

  A month after that trip, Russel, the boys, and I returned to LA for the Wonder premiere. 20/20 wanted to film us arriving on the red carpet—a happy ending where all happy endings are made—in Hollywood. But just before it was time for us to leave, I started feeling guilty. We had gotten to film the 20/20 feature, and we’d been on the set of the movie. I felt privileged and honored to be included in this too, but I said to Russel, “There are other kids with Treacher Collins who would love to have this experience. I want them to have a chance too.” It was the same thing I’d asked Todd when they were looking for an actor to play Auggie: “Did you interview other children too?” My son isn’t more special than the other kids—except to me, of course. I worried that people would think, What did this kid do to be treated like royalty? Why can’t we go? Lots of moms in my position also have stories to tell.

  Russel said, “There’s no way to include everyone so just be humble and let Nathaniel have this. It’s the only upside to all he’s been through. Let’s just be grateful.” So I tried, and later I would be happy and relieved to see that other kids with craniofacial differences had been invited to and attended the premiere.

  We got to ride in a limo to the movie theater, which was cool, and when we got out of the car we were on the red carpet, except it was white, and there were tons of photographer
s shouting, “Nathaniel! Over here! Over here!” to get me to look at their cameras. I was in shock. How did so many people know my name? There were lots of flashing lights.

  It’s a Hollywood mystery as to how they did it, but it had clearly been choreographed, probably by 20/20, that we were first to arrive at the premiere. We were in a big Escalade with tinted windows. They stopped the car, and the 20/20 cameraman hopped out and ran ahead to get ready. The doors opened, and Nathaniel stepped out onto the carpet. For the next twenty minutes, the media went nuts. For the first three, Russel was hiding off-camera, sobbing. My heart was beating fast, not with nervousness, but with excitement.

  Russel composed himself and we posed, documenting for posterity the brief but enormously popular dabbing trend.

  When Nathaniel was born, I’d thought it was the end of the world. On our walks, I threw a blanket over his stroller so as not to draw attention. Now, at a moment when I was standing proud, he was too, announcing, Look at me, people. I made it. I’m not embarrassed by who I am. For him, this moment in the spotlight meant something different than it would to a “normal” kid. Everyone was looking at him, but they weren’t staring. They wanted his picture because they appreciated how he looked for the courage it represented. It was an awesome moment.

  We took our seats and the movie started. As soon as the first image appeared on the screen, Russel started crying again, and he didn’t stop until the screen went dark. Nathaniel whispered that he wished it could go on forever. The hardest part for me was when Via, Auggie’s sister, said, “August is the Sun. Me and Mom and Dad are planets orbiting the Sun.” I looked over at Jacob and he was crying, just like his dad. Later, he said that it reminded him of how badly Nathaniel used to be treated. He said it hadn’t been as extreme as in the movie—nobody ever told Nathaniel that he should kill himself, or drew pictures saying he looked like Freddy Krueger—and what the real-life kids did hadn’t really fazed Nathaniel. But Jacob had noticed how much the unpleasant looks and rude comments decreased when the book came out. He said, as he had before, “I think Wonder helped me more than it helped Nathaniel.”

  Wonder is a warm, feel-good family movie, and Jacob Tremblay brought Auggie to life. When I walked out of the theater, I felt like there was good in the world. Good triumphs. And Wonder, the book and the movie, in real life, in our lives, is helping good to win. This was Hollywood, but it was real.

  When the movie came out, however, as we’d predicted, there was a small whisper of protest from the craniofacial community because they hadn’t cast a boy with Treacher Collins. Most people admitted that Jacob was amazing in the role, but then they might add, “He didn’t look severe enough. He should be drooling more.” A film critic even discussed that it was ironic that the movie was championing the community, but someone with a craniofacial difference wasn’t good enough to act in it.

  Russel and I just shook our heads. Wonder was a blockbuster and the value of the awareness it generated for Treacher Collins is immeasurable. The movie was made for a young audience, and the producers wanted it to reach broadly. We knew from experience—the very experience that had inspired R.J.—that facing people with differences didn’t come naturally to young children. It made sense to ease children into it.

  But millions of people loved the movie, and there were so many others in the craniofacial community who focused on all the good that came from it. R.J.’s goal in writing Wonder had been to change how these kids were received socially, and she achieved it. She truly created a movement, the movement of kindness: Kids who had been seen as scary or teased for their differences were being accepted now, more than ever before. And the empathy she inspired wasn’t just for our community. Her message was to accept anyone who is different, whether they’re transgender, in a wheelchair, autistic, or have Down syndrome or other genetic disorders. She showed that “normal” is everywhere. There are now hundreds of children who like to say, “I’m a real-life Wonder kid.” And that’s a good thing: “We are all Wonder people” suits any number of people with differences, including Nathaniel.

  My mother told me that at the supermarket where she buys bread, there is always a copy of Wonder for sale. That’s how far it’s reached! Poland isn’t a very diverse country, and I can’t even think about what it might have been like if Nathaniel had been born in my hometown. People probably would have thought my child was “deformed” because God was punishing me for something like marrying outside of my religion. But Wonder opened up a window, and people now have a more scientific understanding of how things like this can happen. Nathaniel hasn’t been to Poland yet, but Wonder has paved the way for the trip we will take one day.

  The 20/20 producers named the hour-long documentary about our family “The Real Wonder Boy,” and timed its airing for one day before the movie was released.

  When short clips promoting the 20/20 special began appearing, one of the movie producers called Russel, worried. He said, “This show is too real. We want the movie to reach a wide viewership, and we don’t want people getting scared.”

  I was in the kitchen with Russel at the time, and I heard his tone change. In a tight voice, he said, “Hey, dude, what are you talking about, too real? This is my life.” Then Russel gave him a good five minutes of his opinion. We both knew this producer and were very fond of him. He was a good person, but even someone who had worked so closely with us didn’t see that we had no interest in sanitizing our story.

  Though I was also miffed, I could understand this producer’s point. For a typical 20/20 special, a crew might spend two or three months with their subjects, but they had spent two and a half years with our family, covering so many aspects of our lives. For us, the beauty in the special was that Nathaniel’s similarities to Auggie became a small part of our story. But for the producer, the promos that said, “It’s the real-life Auggie Pullman” made it sound like Wonder was based on Nathaniel.

  None of us wanted to create that impression. The ads beat the Wonder drum, but Wonder is fictional. Our story had started years earlier, and was different. It was ours.

  The night the special aired, Russel was with Jacob at a lacrosse tournament, and they watched it in the hotel lobby with his entire team. Nathaniel and I went to a friend’s house. I had a knot in my stomach. I had no clue what they would show from the hours of filming they had done. Had it been edited to emphasize the parallels between Auggie and Nathaniel, or toned down because reality was too graphic for the general audience? I ended up loving the way they portrayed our story, evolving from our initial shock and fear of the unknown, through all of the sacrifices, to a moment at the Wonder premiere when Nathaniel turns and gives a beautiful smile. It gave me chills.

  As things turned out, the combination of the “Real Wonder Boy” documentary and the Wonder movie release did lead people to make the connection between Auggie and Nathaniel more than they had before (but not in a bad way, based on the box office numbers). They would come up to Nathaniel and say, “Oh, you’re the Wonder boy.” He would politely correct them: It’s not about me; it’s about every kid who has a craniofacial condition. But as time passed and Nathaniel healed from the last surgery, people ceased stopping in their tracks when they saw his face. It doesn’t seem to make a difference to Nathaniel. He knows who he is, and he still doesn’t care what other people think.

  34. Gratitude

  When Nathaniel was two weeks old, there was a baby who joined him in the NICU. He had many of the same problems as Nathaniel, plus a cleft lip and palate. The parents didn’t speak any English, so there was a translator helping them navigate the complicated medical planet onto which they’d just been teleported. The baby got a trach and a g-tube immediately, and his mom came to visit every day.

  Over the years, until the boys were nine or ten years old, I’d cross paths with this family when we had appointments at NYU. The boy had many of the same surgeries as Nathaniel, but his were covered by Medicaid because his parents had little or no income. Each time we saw them,
they had more children in tow. They had the babies, a translator, and the surgeries, which they didn’t have to pay for. Meanwhile we ended up living in a basement because we couldn’t afford the medical bills.

  Early on, this didn’t seem right to me. I was so mad that I found a phone number online and called the Bush administration’s Department of Health and Human Services! Using a dictionary, I wrote out what I was going to say, and when someone answered, I recited, “It’s unfair that some people with Medicaid get care for free. My husband was born in this country, and we can’t afford a simple apartment. We are living like refugees, in a basement, and these people are getting a free ride.” At the time, that was all I could see.

  The woman on the other end of the line listened politely, then said, “I’ll get word to Mr. President.”

  I’m not proud that I made that call. Over the years, my view changed. When I look back, I see that no matter what bad luck we were having, Russel always managed to land a better job. When we couldn’t afford an apartment, we had generous relatives who took us in, and we had friends and colleagues who gathered together to play golf as a way to raise money for Nathaniel’s expenses, and assistance from myFace. We had the education and resources to stay on our feet, move forward when we could, and make our lives better little by little.