Normal

by Magdalena Newman

  What really got me was that I hadn’t wanted to move to Reno in the first place. At the restaurant Russel’s boss took us to when he was wooing him, he told me, “I had the same cancer as you.” He’d had lymphoma. He and his wife talked about how Jesus had carried him through cancer.

  After that, when I talked to my mother about the move, she had said, “Yes, you should go. They are Catholic, they have good hearts.”

  I had trusted these people. They let us down so badly.

  Christmas and Hanukkah came and went. The surgery was two months away. Russel was home every day, lifting weights and looking for a job. Then he got a phone call from Brian Griffith, one of his closest friends from the job he’d had in West Hartford.

  Brian said, “I heard you’re out of work. How come you didn’t call me? Come work for me; I’ll create a position for you.” They wanted Russel to start right away, but they were very accommodating and agreed he could start on May 15, after Nathaniel had been recovering for a month. The only caveat was that we would eventually have to move back to Connecticut, but that was a while away.

  All was good. Russel was still getting paid by his old job; he could stay home and help Nathaniel through surgery; and his new job would be ready and waiting as soon as we knew Nathaniel was stable. Brian was an angel among us.

  We had agreed to let 20/20 do a profile of our family to coincide with the release of the Wonder movie. We felt honored to represent the community. The film crew wasn’t intrusive—in the beginning they did more following than interviewing. They went with Nathaniel to the playground. They came hiking with us and the dogs. And they spent time at our house, watching our daily routine.

  When we first started talking with them a year and a half earlier, we were just beginning to explore the possibility of having the halo surgery. The only plan at that point was to talk about the movie release and show a kid who had a similar life. But now it morphed into Wow, this major surgery is insane! Instead of finishing our interviews before the procedure, 20/20 decided to make it a more in-depth story, following our family for a couple of years, leading up to and including Nathaniel’s major surgery.

  For the first nine months or so, we worked with a team of producers who were getting to know us and shooting B-roll—extra footage of us going about our lives to complement the interviews. Then Elizabeth Vargas came to Reno. She didn’t just sit down and ask us questions. She accompanied Nathaniel to a trampoline park and went ziplining with him in Lake Tahoe. She came to my Body Pump class. She put her whole heart in the project. We were both mothers of two sons and fitness lovers, and I felt a real connection with her.

  25. A Dog Angel

  Nathaniel: In Seattle, the night before the big surgery, I was allowed to eat whatever I wanted. It would be the last meal I tasted for four months. Four months! We went to an Italian restaurant and I ordered a big plate of fettucine Alfredo and a huge piece of cheesecake. Our appointment at the hospital was at six o’clock the next morning.

  It was March 22, 2016. The surgery started at 8:00 a.m. and lasted more than eleven hours. Dr. Johnson came out of the OR first. He told us that Nathaniel had come through, and that he was pleased with the results. Dr. Hopper was finishing up. 20/20 wanted to film us when we first saw him, but Russel and I said we preferred to be alone.

  Nathaniel was still asleep when we went into the recovery room. He wasn’t super swollen yet—that would come later. He had a cage mounted onto his face and skull, just like the one we’d seen on Izzy. It was difficult to look at, but his face was still that of our beautiful Nathaniel. I hadn’t expected him to look so peaceful.

  We left his room and told the 20/20 cameras what we’d seen and how we felt. Then we said goodbye to the crew and were still right outside the door to the PICU when Dr. Hopper and Dr. Johnson emerged. It had been four hours since they finished the surgery. Nathaniel was still asleep, and they’d just checked on him for the last time before going home to get some much-needed rest.

  They told us, “Go to the hotel. You need rest too. He’s going to be sedated for a long time. He won’t remember anything about tonight.”

  “Oh no,” I said. “I’ve never done that before. I’ll stay with him.”

  I knew the doctors were right: After such a long surgery, Nathaniel would most likely sleep through the night. But what if he woke up? Even though his eyes were sewn shut, I wanted him to “see” me and Russel right away. Ever since I’d kept vigil in a chair next to his bassinet in the NICU, I’d never left his side before or after a procedure, not even to get food while he slept. I barely went to the bathroom. And that’s exactly what I planned to do now: Sit on the chair next to him, indefinitely.

  Russel said, “She’s going to be hard to convince.”

  But the doctors urged, “Trust us, it’s going to be fine.”

  Russel and I went back in to say goodnight. Nathaniel was still resting comfortably.

  So we went back to the hotel, had a bottle of wine, and watched The Revenant—that movie with Leonardo DiCaprio and the bear—to unwind. Some advice: The Revenant is a really bad movie for unwinding. Nonetheless, we fell asleep around midnight.

  At 4:00 a.m. the phone rang, a startling interruption in the quiet night. A voice said, “We have an emergency, please come to the PICU as soon as possible. Nathaniel is flatlining.” I was half asleep, but when I hung up I thought Nathaniel had died. For some reason I called my mother and told her that. I don’t remember how Russel and I got to the hospital. All I know is that when I walked into the room, I saw right away that the monitors were on and he was stable.

  Nathaniel had lost his heart rhythm for twenty-two awful seconds, but thanks to an amazing nurse and a few quick chest compressions, he had regained it quickly. The doctors reassured us that there was no loss of oxygen and no broken ribs, so there would be no long-term effects. They believed the incident was caused by a new sedation medication or an infection in his heart, but they couldn’t be sure which.

  Russel was thanking the nurses for saving Nathaniel’s life, telling them how grateful we were for them, but I barely registered any of it. I was sitting on the floor, rocking back and forth, pulling my hair. It was the same surge of overwhelming shock that I had experienced when the doctor in North Carolina told me he had poked Nathaniel’s brain (sorry, this is really the last time, I promise), the same intense distress that I was sure had given me cancer.

  Nathaniel: One of the medicines they gave me when I was asleep stopped my heart. Of course I had no idea this had happened, but a few days later, when I had my sight back and was able to write on my little tablet, I told my parents that I had dreamed I was in a blank room, and that our dog Coco was there, jumping on my chest and telling me to wake up. I didn’t want to wake up because I was happy to see her and wanted to play with her.

  My mom got a weird look on her face. Then she told me that I’d been clinically dead for twenty-two seconds and that the doctors had used chest compressions to bring me back to life. I had died and come back to life! Coco had helped! (Though the doctors and nurses also deserve some credit.)

  We were all pretty blown away by that one. Coco had been gone for two years and was barely in my dreams anymore. We had two new dogs, Snowball and Brownie, in addition to Smokey. But when I was dying, it felt like Coco had decided to help and comfort me.

  For three days after Nathaniel’s heart had stopped, I sat next to him, staring at the monitors. I was afraid to leave, even just to go to the bathroom. Nathaniel was half sedated. His eyes were sewn shut—shifting his eyeballs or blinking would be too much movement for the delicate work they’d done near his eyes. His head was so swollen that we couldn’t put his hearing aid back on. He was being fed through a g-tube. He says he really didn’t like the part when he couldn’t see or hear, which is his understated way of saying it was his darkest moment. With his eyes forcibly closed, it was literally dark.

  Nathaniel doesn’t talk much about pain. Like my dad, he has a remarkable ability to shif
t his focus from physical pain to other things. But he says the only thing that got him through those first couple days was having Russel sit very close to him, talking loud enough so he could hear, telling him every story he could think of about each of the dogs and trying to remember entertaining bits from the Simpsons episodes Nathaniel liked most.

  After two days they took the sutures out of his eyes, but even so he couldn’t see well because he was still swollen. Despite that, he never got scared. He never panicked. He handled it with incredible grace. Pain, hours of waiting, his body trying to rebound on so many fronts from the assault of the surgery. It was hard for him to entertain himself, and the only way he could communicate was to write, but even that was difficult. I had worked out an “I love you” signal in advance: three gentle squeezes of my hand. He did it over and over.

  Little by little, as the swelling went down he could open one eye and try to watch a movie. Once both eyes were fully open, then he could communicate by writing, but even that was challenging. The first words he wrote in shaky, large letters on the LCD tablet we handed him were “no more drugs.” He hated the jumbled feeling of the painkillers more than he minded the pain.

  Six days after major craniofacial surgery that lasted eleven plus hours, Nathaniel was resting relatively comfortably in a room at the Ronald McDonald House, where he was supposed to stay for six weeks until the expansion of his facial structure was complete. Jacob was in Reno for lacrosse camp with Russel while Nathaniel recovered, and one weekend they came to visit. Jacob was really excited to see his brother, but when he came into Nathaniel’s room, I saw a sad aura come over him. He wanted to talk and play, but Nathaniel couldn’t do anything but play video games. Jacob kept him company while Russel and I went downstairs to prepare his food, and he told us later that as soon as we were gone, Nathaniel started crying. Jacob assumed it was because of the pain, but Nathaniel insists it was frustration. Since he couldn’t talk, he wrote a note to Jacob on his little whiteboard that said, “Stop looking at me. I don’t want you to see me like this.”

  A few days into his visit, Jacob was taking pride in helping his brother communicate. Nathaniel’s mouth was wired shut, and Jacob was the best at understanding what he was saying. If Nathaniel said, “Hmm hmm hmm hmm hmmm hmm,” I couldn’t figure it out and would ask him to repeat it, but Jacob knew he was saying, “I need to go to the bathroom.”

  Nathaniel: When I felt my worst, it was hard to believe this surgery was a good idea. I didn’t even look forward to getting rid of the trach. Mostly I lay in bed, dreaming of eating pasta. One day I was sitting in bed in this near-constant state of frustration when Jacob ran into my room, hit the wall above my head, and ran out. Then he did it again.

  I was a cannon, ready to explode. When Jacob hit the wall, it was like the Fourth of July. With my mouth wired shut, I couldn’t yell at him to stop. I made a frustrated noise, stormed downstairs, and ferociously typed on my iPad to tell my dad. I know Jacob was behaving like a normal little brother, but if he really cared about me, he wouldn’t have the audacity to tease me at my lowest point. He still thinks that how mad I got is hysterically funny. I think he’s half-jealous of the attention I get. You’d think he’d be over that already. I keep trying to explain that I can do without the attention.

  Every time I had a jaw distraction, there were screws that needed to be tightened daily in order to slowly expand my bones, but this time there were more than ever before. At the Ronald McDonald House, when my parents first started turning the screws, I didn’t feel it. But the more they twisted, the more unpleasant it got, until it was an aching pain. After three weeks, when the doctors thought they’d gone as far as possible, when I’d been stretched as far as a kid could possibly be stretched, and the X rays confirmed it, we locked everything in place.

  The expansion had taken less time than the doctors had anticipated. The device would stay on until the bone healed—four months total—but the doctor told us, “Everything is good. He’s stable and you know what you’re doing. You can go home for two or three weeks until your next checkup.”

  We had our room at the Ronald McDonald House for a few more weeks, but Nathaniel would thrive best at home, in his own environment, with the dogs to comfort him. We knew how to take care of him, even if it still didn’t come to me easily. I remembered the first time I had tried to suction Nathaniel’s trach—he gagged and I promptly threw up. I’d come a long way since then, but I would never be a natural nurse. Whenever Russel was around, Nathaniel would ask him to handle medical procedures. He’d say, “I love her, Dad, but you’ve got to do it. She’s not gentle.”

  Russel and Jacob had already left. The day after the doctor set us free, I packed up the room, cleaned, and put everything in the car. Nathaniel and I set out early the next morning on the twelve-hour drive to Reno. Nathaniel was semi-reclined in the passenger seat, surrounded by pillows, and every three hours I stopped and fed him. In a strange regression, I was back to feeding him through a g-tube, and to feed him in the car, I sanitized my hands and the syringe with wipes and a bottle of water. It wasn’t exactly a sterile environment to start with, and then it got worse.

  I took a “short-cut” to avoid the main highway because I wanted privacy when we pulled over to feed him. The downside to this was that our route had very curvy roads. We were making good progress when Nathaniel tapped my arm and gestured wildly. I looked over and saw a panicked look in his eyes—his face was turning purple. He was throwing up, except his jaw was still wired shut! He was choking! Reaching over, I opened his trach (which would stay in place until he healed), and vomit came out through the hole.

  I pulled over and suctioned the trach. Then I thought about how much trouble we’d be in if there was a real emergency. We’d driven for miles without passing a gas station and with no cell signal, and there was no sign of anything ahead. We had the privacy I’d wanted: There were no other cars on the road. But we were in the middle of nowhere, with no help if we needed it. I got us back on the road headed toward civilization as quickly as possible.

  The roads were very dark as we drove through the desert outside of Reno. We were on a divided highway when I noticed a car right next to mine, moving slowly with its hazards blinking. It was very strange. I was afraid it was a carjacker so I kept my eyes focused straight ahead. A moment later, I almost hit a horse. When I stopped, I saw there were several horses running on the parkway. Drivers had turned on their hazards to alert others as Animal Control tried herding them off the road. I’d anticipated many obstacles before making this journey, but wild horses on the highway hadn’t made the list.

  Nathaniel: My face was really swollen at first, a marshmallow face that I was afraid was going to be mine forever. Then the swelling went down and I didn’t look much different.

  My mom has always told me that when I was a baby, formula made me barf, so it was funny/not funny to discover that now, having a g-tube again at thirteen, I was able to confirm her story. When I was in the Ronald McDonald House, they fed me formula and I felt nauseated all the time. It got better as soon as I was allowed regular food (that had been liquified).

  While I was being fed, I played on my iPad. Being fed through a tube wasn’t satisfying. Eating and getting full without ever tasting a bite is a really strange sensation, and when I was done, I still wanted to feel food in my mouth. It was like watching a movie without being able to hear anything. I could feel the temperature of the food. If it was really hot, I’d feel the warmth in my belly, but since it was summer I preferred cold foods. More than anything, I was dying for pasta. Mom made it for me, but of course I couldn’t taste it. Spaghetti and meatballs through a tube that goes directly to your stomach just isn’t the same.

  Mom taught Jacob to feed me, for “emergencies” she said, but I’d rather have eaten a porcupine than let him do it. I wasn’t letting him near a hole in my stomach for a lot of reasons. He may be good at lacrosse, but I wasn’t confident in his g-tube technique.

  When
I felt my worst, it was hard to believe this surgery was a good idea.

  We questioned our decision each and every day. Life with a trach hadn’t been so bad, had it? Why were we putting him through this? Were we the worst parents on the planet? Was this just too much?

  Nathaniel had a problem with a tear duct in his right eye, which led to a series of complications. He went into the operating room for yet another surgery. While making one last trip to the bathroom, he decided it was the time to dance. On a blog for family and friends following Nathaniel’s progress, Russel wrote:

  Wires, screws, g-tube, jaw wired shut, four pounds of metal strapped to his face and yet he danced! As if to say, “I got this, Daddy! Stop worrying!” He smiled through the bars and screw-turning and blood and wires and stitches and stares and pain and g-tube. He worried more about his momma than himself. He found ways to let his puppies lick his beaten face. He managed to tolerate Jacob. He let me kiss him. He laughed and danced and loved. He found ways to be the miracle that he is.

  Nathaniel: I’ve been in the hospital enough to know my way around. I don’t worry—I just go with it. If I’m in pain, I don’t ask for medicine. Instead, I think about something else until it goes away. If it gets really bad, I tell them that it kinda hurts, but on a pain scale of one to ten, the highest number I usually say is a three because I don’t want them to drug me. The meds make me feel nauseated and droopy, which is worse than being in pain.

  The only time I gave my pain a ten was when my IV shifted and the fluid was going into my skin instead of a vein. It happened in the middle of the night. My wrist swelled up. It felt better as soon as they took it out. They wanted to put a new one in, but my dad told them not to. He knew that all I wanted was to go back to sleep.

  There were more complications with this surgery than I’d ever had before. I kept thinking I was about to feel better when another issue would come up. I’d get sick, or they’d decide I needed to fly to Seattle for another procedure. My face—the main focus of everything we were doing—was coming along great. But my stupid eye, which was supposed to be a minor side surgery, just kept causing problems. Everything that could go wrong did. That eye was so annoying—at some point I just wanted them to give up on it. They ended up doing seven procedures after the big surgery, and when I say “procedure,” I mean I had to be put to sleep while they fixed something. Anyone else would call that a “surgery.”