Normal

by Magdalena Newman

  Finally, in late January, the time came to remove Nathaniel’s trach. We’d done a sleep study and Nathaniel was able to sleep with it fully capped, his breath silent and sure. This confirmed that he could breathe without the trach. It was a miracle—here was child who had been born with no nasal airway. Sixty-plus surgeries and procedures later, and at night he was now so quiet that it made me nervous—I was used to monitoring his breath, even in my sleep.

  When parents first bring home a newborn, there’s usually a moment when they stare at the crib, watching their sleeping baby’s chest rise and fall peacefully. That night had eluded us for so long. Now it was ours.

  “It’s going to be so anticlimactic,” Russel said the night before it was scheduled to come out. “Remove a few Velcro straps, slide out the trach, and slap on a Band-Aid. Then we’ll walk out of the hospital and be on our merry way. It’s too easy! After thirteen years with a tracheostomy, thirteen years with a hole in his neck, thirteen years of ‘What’s that in his throat—’ ”

  I chimed in, “Thirteen years of infections, thirteen years of suctioning, thirteen years of cleaning, thirteen years in a tub instead of a shower—”

  And Nathaniel added, “Thirteen years of ‘Don’t go underwater like all the other kids,’ thirteen years of nurses—”

  The family put it all out on the table: Thirteen years of challenges at school; thirteen years worried about a fall, a slip, a hit to the neck; thirteen years of checking oxygen levels; thirteen years of annoying calls with medical supply companies; thirteen years of meddling respiratory therapists; and, finally, thirteen years of questions about the future.

  Russel exclaimed, “Thirteen years and I want marching bands! I want glitter falling from the sky!”

  Then Nathaniel said, “Thirteen years and I’d like to know if I can bring my iPad and DS so I can watch movies and play games while they’re working on me.”

  We all laughed.

  Strangely, unexpectedly, Russel felt a little sad. He said it was because we’d spent so many precious moments with Nathaniel at night: Listening for his breath. Gently cleaning his trach. Making sure it was straight. Is the Velcro strap too tight or not tight enough? What’s that smell? Is it infected? Suction? No suction?

  Russel said to Nathaniel, “Promise me something. Promise I can always take care of you? Promise you will still need me?”

  His response was classic Nathaniel. “Dad, I want my trach out. I never said I wanted them to take my Treacher Collins away. I’ll always need you and Momma.” Then he smiled and ran off to play Pokémon as if to, say once again, Stop making it a big deal, Dad. I got this.

  Nathaniel: Ten months had passed since the surgery, and ever since they’d taken off the halo I’d been practicing breathing through my nose and sleeping with the trach capped. Even with the trach closed, my oxygen level never dropped below 97 percent, which meant I didn’t need it anymore. If you made a pie chart of how I spent my waking hours during my whole life, “dealing with the trach” probably ranked first, although “being annoyed by Jacob” or “hugging my dogs” were both close in the running. I mean, if I’d spent as much time playing the piano as I had in hospitals trying to get rid of the trach, I probably could have been a concert pianist like my mother. But for this, I wouldn’t get a grade or receive a trophy for my efforts. I had to take everyone’s word for it that my life would change for the better.

  A crowd gathered around my hospital bed. It was Mom, Dad, Jacob, Dr. Johnson, and the camera guy from 20/20. It was kind of an intense moment, and it was also kind of a nothing moment. They took the trach out, something that we’d done every two weeks for my whole life, but this time, instead of putting a new one in, they just bandaged the hole and threw the trach in the garbage. Just like that.

  After they took it out, we sat for a few minutes and talked. It felt so weird, like something was missing. Using my nose to breathe wasn’t instinctive yet. If I stopped paying attention, I’d go back to breathing through my mouth, and then it felt like my trach had come out and I couldn’t get enough air without it. I was scared of losing my breath, and worried that without my trach I’d suffocate. I didn’t like that feeling.

  Suddenly, it occurred to me that maybe I’d never get used to being without it. I’d had a trach my whole life. It had always been a part of my body; I never knew a time when it wasn’t there. It was how I breathed. I couldn’t grasp that I was going to live this way forever. It felt like a loss. Before I’d had three ways of breathing: through my nose, my mouth, and my trach. Now I only had two, like everyone else. How would I feel comfortable eating and sleeping without an open trach?

  Quietly, I asked my mom to send everyone out of the room. When they were gone, and it was just Mom and me, I said what was on my mind.

  I want my trach back. Can they put it back in?

  Mom said, “Let’s just wait an hour and see what happens.”

  I knew, obviously, that this was the whole reason I’d had the surgery and that horrible heavy halo. This was what my parents and all the doctors wanted for me. They had all worked really hard toward this for a long time. We’d all talked about how excited we were, and I was embarrassed to feel the way I did, but my trach was my security blanket. It always had a name. It changed over time, but the most recent one I’d had was named Charlie Hudson. It was hard to let Charlie go.

  The trach just popped right out. This was why we’d had to be so careful with it—because it came out easily, and the minute it did, his body would start healing itself. This was precisely what I had fought against for so many years, so it felt really strange to actually want the trach to come out and the healing to begin. As Russel had predicted, the exact moment they removed it was . . . just a moment. Then they taped up the hole and it was done. Later that night, talking to Russel, I said, “All the suffering and hard work all came down to a single moment, that moment the trach came out. We succeeded. It was all worth it.”

  Dr. Hopper hadn’t waved a magic wand over Nathaniel and gotten perfect results. This surgery was a new procedure and the doctors still had a lot to learn. Nathaniel’s body rejected some of the plates that had been put in his head and one of the implants surrounding his eye. The wound on his head didn’t heal quickly. He needed to have twelve follow-up surgical procedures that Izzy, the child who’d had the same surgery before him, hadn’t needed. There were weeks when we’d rushed to the hospital five times. He was on antibiotics for three months after his heart stopped, in case it was an infection, and we added an infectious disease doctor to his team—but we finally reached the goal we’d worked toward his entire life.

  Nathaniel is finally normal, and by “normal” I don’t mean “like everyone else.” I mean “free.” For us, normal is an absence of need, an absence of special attention, an absence of fragility. He still has differences, but I don’t care that he doesn’t look like eve-ryone else or still has a hearing aid. To us, his appearance was never a problem. It was the trach that caused the most illness, interventions, and stress. It was what kept him the furthest from normal.

  I was almost normal too. I was done with chemo and my hair was growing back in. I hadn’t gotten official word that I was cancer-free, but I knew in my head and my heart that I was fine. If my cancers had been reactions to Nathaniel’s worst moments—getting his brain poked by a doctor, flatlining after this surgery—then my healing would follow his. Now we were both better; a double celebration.

  It wasn’t just Nathaniel who had stepped into the realm of normal. It was all of us.

  31. Gift From God

  We called Nathaniel’s thirteenth birthday party the “Ding Dong My Trach Is Gone” party. We hadn’t been in Seattle long enough to make a lot of friends, but we invited the two boys who had showed Nathaniel around his new school. Hunter, a friend of Nathaniel’s from Reno, came to stay for the week. The Tremblay family—Jacob, his sister, Erica, and his parents—also came. We invited Ann, the woman Russel had met in a burger joint, and her husband and
children, as well as our realtor, Jen, and her two boys. Jacob invited the first friend that he made in Seattle, a classmate named JP.

  The adults drank wine while the kids played with Nerf guns. Then a video game truck Nathaniel had requested arrived, and the kids disappeared into it until it was time for cake. Nathaniel ordinarily didn’t like having “Happy Birthday” sung to him, but that year he didn’t mind.

  Thirteen is a milestone birthday, and I’ve always loved checking off milestones. Nathaniel had been through more of them than most children his age, but now he was in a game truck with the rest of them, thinking only about whether he was dominating Mario Kart.

  The 20/20 cameras had been with us on and off during the period leading up to Nathaniel’s big surgery, afterward, and throughout my cancer treatment. Now Nathaniel and I were in the home stretch of our medical issues, the Wonder movie would soon be released, and they were nearly done filming us. The producers wanted Elizabeth Vargas to do one final set of interviews, and for some reason they wanted to tape them in LA. We agreed, and when I texted Todd, Wonder’s producer, to tell him we were coming to town, he said, “If you stay an extra day, I can get you three tickets to the Beauty and the Beast premiere!”

  We spent our first day in LA talking to Elizabeth at a home in the low hills that cradle the city. The crew told us they had rented that house on Airbnb, but we’d be going to a second location for the afternoon. They wanted footage of Nathaniel and Elizabeth walking with the sunset in the background. Going somewhere else just for a sunset sounded a little excessive, but whatever; I trusted they knew what they were doing.

  Later that day, they loaded us into SUVs. A camera crew filmed us on the drive to the second location. This was also odd—why did they want footage of us driving?—but we figured this was their last chance to make sure they had everything they needed. We arrived at a neighborhood with armed guards at the gates. Strange. Then we pulled up to a gorgeous house.

  The producers said, “We’re going to film you here, but don’t get out of the car yet. We want Elizabeth to greet you and walk you inside.”

  By now it was clear there was something they weren’t telling us. I looked at Russel. He shrugged and mouthed “TV” as we walked toward the house.

  Elizabeth opened the front door and welcomed us, which seemed weird because we’d seen her literally five minutes before. Showing us inside, she said, “It’s been so wonderful working on your story that we wanted to give something back to you.”

  Then Christina Aguilera walked into the room. We were in her house, and it was the nicest one I’d ever seen. She led us to her living room, which had a fireplace, sofas covered with white furs, gold décor, and a grand piano. She already knew our whole story. She’d read letters that Russel had written Nathaniel on every birthday, and she knew all about of the night of his birth.

  After we’d talked for a while, she asked, “Would you mind if I sang ‘Beautiful’ to Nathaniel?”

  Would we mind?

  Then we sat five feet away from Christina Aguilera, in her living room, as she sang to us. She was tiny in person, but her voice was powerful. It gave me goosebumps. I thought, This is the instrument we all have, but not all of us can use it.

  Her accompanist was playing on a shiny black piano with clean, classic lines in that grand room. Looking at it, I thought back to the antique instrument I’d learned on at my great-aunt’s humble home. It was ornate, with carved legs and other decorative details; even the music stand had flowers carved into it. The music I played on that piano and afterward was classical, a very different genre. I grew up strictly following sheet music, adhering exactly to the instructions given by the composer. When Christina sang, she had a freedom of performance that I had never experienced. It was as if she and the pianist were having a conversation. They were looking at and supporting each other, and it was like he was talking with his hands. When you perform Bach, it’s meant to sound the same every time. He tells you when to be loud or soft, fast or slow. When Christina sings, there is improvisation and inspiration that makes each performance unique.

  Giving birth to Nathaniel took me off the sheet music. All the parents I knew read What to Expect the First Year. However, the day I brought Nathaniel home from the hospital, I threw mine out, both the Polish and English versions. There was no way to apply it to raising Nathaniel—I had to improvise every day. It was a different kind of music.

  As Christina sang, Nathaniel held the Grammy she’d won for that very song, and Russel and I were transported back to the moment we had accepted Nathaniel as a gift from God. And this moment, in the present, was itself another gift from God.

  As we walked out of Christina Aguilera’s house, Russel said to Nathaniel, “Dude, what do you think? That was insane!”

  Nathaniel asked, “What did I do to deserve this?”

  Russel said, “The fact that you asked that question is exactly why you deserve it. You don’t even realize.”

  Nathaniel doesn’t see himself as a kid who’s been through that much, and he accepts what he’s had to endure. This makes us feel like he deserves everything good that comes to him. But he’s right in that he isn’t the only kid who’s been through a lot. There is no way to even out the gifts and struggles we are handed, but we hope his life impacts the world for good.

  The next day, we dressed up nicely for the Beauty and the Beast premiere, which was a matinée. We took photos with the boys, feeling very Hollywood, then left Russel behind at the hotel because we only had three tickets. We sat with Todd’s family during the film, dazzled by every frame and how special it was to be among the first to see it.

  John Legend and Chrissy Teigen were sitting right behind us. A celebrity is as much a magnet for undesired attention as a kid with a craniofacial difference; but nonetheless, I decided to approach the singer directly. “I hope you don’t mind me coming up to you,” I said, “but we want to tell you that my husband admires your music. Every time he’s grilling dinner he puts on your songs.” His reply was very gracious. His wife was dressed like a princess, and when she looked at Nathaniel, I noticed a millisecond of shock register on her face. I could tell she felt bad for her reaction, but I understood it so I tried to make her feel comfortable. Otherwise, I didn’t focus on the rich and famous all around us. I just wanted my kids to have the most fun they could have without getting lost in the crowd.

  But, for all the glitz, glamour, tears, and miracles, the best moment of our trip was when we took the kids to the Santa Monica pier. We rented bikes and rode along the beach. The boys were all big smiles. I felt the wind in my hair, the ocean breeze on my skin, and the warmth from the sun on my head. Nobody passing by would know what a crazy journey we’d had or how special it was for us to be traveling together just for pleasure, not to see more doctors. We looked like a regular family of four, enjoying a relaxing vacation—a normal thing that normal families do. We all had scars, but this was as close to normal as we got, and it was good enough for me.

  32. A New Normal

  Nathaniel: I went back to school in March. I’d done most of sixth grade in Reno, so in Seattle I was the new kid, showing up post-surgery, finishing out seventh grade with a bunch of strangers. I’d wanted to be homeschooled, but my parents said no.

  his time Dad and I didn’t write a letter to prepare my classmates. Wonder had done that work for us. And, as seventh graders, we figured they should be able to handle me, and we were right.

  Even so, on the first day I felt like I had walked into a movie theater when the movie was already nearly over. I was clueless in all my classes. There was no real recess where I could make friends. If they finished lunch early, some kids hung out on the basketball court, but that wasn’t my thing, so I went to the library to read or do homework.

  For the first time in my life, I didn’t have a nurse shadowing me. It was only when I stopped having one that I discovered what it was like to be independent. I was so used to being followed. The nurses were okay, but it was ne
ver part of their job description that they had to talk to me or be fun. Mostly they were one more way in which I was a little bit different.

  After a few weeks, things got better. In Language Arts I sat next to a kid, just chilling since I still didn’t have friends. He was wearing a Pokémon shirt so we got into a conversation about that. Then I think he wanted to get at the fact that I have Treacher Collins but didn’t know how to bring it up, so he said, “I’m Andy. I have Asperger’s.” I think that was Andy’s way of saying that he was different too. We had that in common.

  “Cool,” I said. Then we started talking about random stuff like Minecraft and, just like that, Andy became my best buddy. From there, I started knowing my way around the school, I (mostly) caught up on schoolwork, and I spent hours after school with Andy playing video games and inventing superhero fantasies.

  Andy has a cat named Bella who isn’t very nice—she even gave Andy an exclamation mark–shaped scar—but Andy loves this mean cat. Once his grandparents came to visit him and brought their blind, deaf dog, who was also losing his sense of smell. If a dog can’t smell, hear, or see, it can’t do anything, so getting around the house was impossible for him. As the dog stumbled around, Bella kept pouncing on him. He was tiny, smaller than Bella, and he was terrified when he lost his balance. I felt so bad for him. It took a minute for me to connect his state to how I was during the big surgery. It was a sorry state, but I never thought of myself as pitiful. Maybe that old dog didn’t either.

  The end of the school year couldn’t come quickly enough, and then it was summer. Summers had never been fun for me, but that summer, being trach-free opened up the world more than I expected. For instance, being in a windy situation had always been unpleasant before. One time, at a playground with my cousin Hayden, the wind rushed into the trach, overloading it with so much air that I couldn’t breathe. But if I closed the trach, I’d have to breathe harder to get enough oxygen. Before surgery, I’d never sat around moping over the wind and its effects. I never thought, Hey, I should go through surgery to change to shape of my face so that I can hang out on a windy day. But now that I could, it was a nice improvement.