My three youngest siblings, Michal, Eva, and Julia, traveled from Poland to Seattle to take care of Jacob, Nathaniel, and the dogs when I had to be in the hospital. Russel was mostly around, but he had already taken a lot of time off work and wanted to prove to Brian that keeping him on staff was the right thing to do.
I barely grew up with these three—Julia is twenty years younger than I!—but through the miracle of Skype we are very close. For the first year of Nathaniel’s life, I was too busy and sad to talk to my mother, and she was very upset, so after that, we talked almost daily. She was a voice of reason for me. Eventually, I sent them a computer and a webcam.
The first time we talked using Skype, we went wild. I had a cup of coffee, my mother had a cup of coffee, and we were in our respective living rooms, giddy with joy that we could see each other across the ocean! Skyping with her became part of my daily routine. My mother was technologically useless, so my brothers and sisters had to help her get online every day. I’d ask them about their lives, and that is how I got to know them, seeing them every day on that screen.
I absolutely trusted my siblings not just to keep the household afloat, but to do things my way. Michal is a rock star. He knew how to handle the dogs because he had stayed with us in Reno to help out during Nathaniel’s big surgery. Julia had also come for part of that and was very responsible (plus she loves to clean!), and Eva was in school studying to be a pharmacist, so she had some level of medical training. They learned how to feed Nathaniel through the g-tube and suction his trach. They bought fresh fruit and made sure Jacob ate. It comforted me to know that they were not only taking care of Nathaniel but also entertaining Jacob by shooting hoops with him in the driveway and learning how to play lacrosse. It was heartwarming that my boys were getting to know their aunts and uncle.
Every time Michal picked me up from the hospital, he’d take me to get a juicy burger, then we’d head home for a glass of wine. When I walked through the front door, everything was perfect. The house was clean, the laundry was done and put away, and Nathaniel, Jacob, and the dogs were happy.
28. A New Face
On August 9, 2016, four months after Nathaniel’s halo went on, it was ready to come off. This was another eleven-hour surgery that started at 8:15 in the morning. At the time, I was only halfway through my treatment, and the chemo had kicked in hard. My risk of infection was super high so the doctors didn’t want me anywhere near the hospital, but I would not miss sending Nathaniel into surgery. He sat on my lap all morning. After Russel carried Nathaniel to the operating room, Michal drove me home, where I slept in my own bed instead of a chair in the hospital waiting room.
It was the end of the summer. My sisters had left, but Michal was staying for another month, sleeping on our living room couch. Pat Chibbaro, the nurse from NYU, had come in for the surgery, and she slept in Jacob’s room. Jacob slept with Russel and me. Our house was often packed to the gills, but we always found a way to make it work.
Pat and I had formed a real friendship outside of the hospital. She radiates positive energy and immediately connects with people—it’s her gift. Whenever I talk to Pat I know there’s going to be laughter, even right before a scary surgery. With Pat, you’d be laughing on your deathbed.
For this procedure, Pat was in the OR watching out for Nathaniel and texting me and Russel updates. Removing the halo was the easy part. Using 3D imaging and modeling, templates and plastic “cutouts” were created prior to surgery to guide Dr. Hopper in shaping new cheek bones and eye sockets for Nathaniel. A neurosurgeon took two bone grafts from his skull to be used for the reconstruction. This was very important—Nathaniel’s eyes would now be protected, and they’d be situated in the correct place relative to his new facial structure. It would also change his appearance, which made us a tiny bit sad: His perfectly imperfect face needed no changing; however, this adjustment was about the safety of his precious eyes.
Dr. Hopper then fit the grafts into place and adjusted as needed, then they were secured with small plates and tiny permanent screws. Over time, this would all fuse together and become one solid bone. Finally, Dr. Hopper moved Nathaniel’s eyes forward to rest comfortably in his newly reconstructed face, a part of the operation that I understood was going to happen, but could never bring myself to picture.
Being at home, sick in bed, during this surgery felt like a failure. I was used to waiting with Russel, sleeping while he read, and feeding off of each other’s love. I wanted to be there in the hospital, to protect my son.
We were optimistic that our ultimate goal, trach removal, was now in sight. To find out if Nathaniel could handle it, we needed to do a sleep study to track how often his breathing slowed or stopped during the night, but that wouldn’t happen for another few months.
I was back in the recovery room by the time Nathaniel was brought out of surgery. To see his new face floored us—it was as if Dr. Hopper and his team had given him the face he was intended to have. Russel and I kept looking at Nathaniel, then at each other, then back at Nathaniel and each other again. We were filled with emotions: Did we miss his old face? Would he accept all of the changes?
Although Nathaniel was named after the mythical Scandinavian prince from my childhood books, Russel likes to say that he was named for his grandfather, Norman Koslow. Looking at our son’s face, Russel saw his Popi. He turned to me and said, “Nathaniel is a Koslow through and through. A surgeon has restored my son to what God or nature intended all along.”
Nathaniel: When Dr. Hopper said the surgery would change my face, I said, “Okay, but not too much. I want my dogs to recognize me.”
I was not in the best shape when I woke up. I thought getting the halo off would feel good, like pressure had been relieved, but in fact it felt like a knife had been ripped out of my head. My eyes were swollen shut again. Being blind for two days was scary and made me feel like I was going crazy. I don’t think I was on pain medicine. I prefer to ignore the pain. This sounds heroic, but it’s not that hard after surgery, which is like a planned, calculated injury. The element of surprise, like when you stub your toe, makes pain harder to handle because it comes out of nowhere, but I am pretty good at pushing it away when it emerges slowly.
In spite of the pain and swelling, my head felt much lighter without the halo—almost like I had super strength—and best of all, my jaws were free. The first meal I had was a big bowl of pasta and meatballs. It tasted soooo good—I’d been dreaming of that moment for so long. The doctors were right: I couldn’t really chew, and I even had trouble swallowing. I think my muscles were really weak. But just being able to put food in my mouth and taste real flavors—that in itself was a huge improvement. For the first time in my life it made me happy to know that I’d be able to taste food every day. It felt like the best present I’d ever been given.
29. Two Wonders Meet
The producers of Wonder had invited us to visit the set in Vancouver, and we scheduled our trip for a week after Nathaniel’s halo was removed. It was a two-and-a-half-hour drive from Seattle, and to my surprise, the set, which consisted of a cluster of trailers and a big building that we later learned was the sound stage, was kind of hidden in the center of town. Each trailer had an actor’s name on it, and we were beyond thrilled when we were shown to one with Nathaniel’s name on it! Inside R.J. had left us multiple editions of the book, in each of which she had written, “We are all wonders” above her signature.
We were escorted by Todd, the producer, to the soundstage. It was hot on the set, and as soon as they stopped filming, all the fans turned on at full speed, buzzing loudly. There was a flurry of activity as people started talking and allowing themselves to cough. Crew members ran to the actors to fix their hair and makeup, and then everything was quiet again as they resumed shooting, and nobody could leave.
We also toured the sets of some of the rooms that would appear in the movie: a classroom, the Pullmans’ kitchen, Auggie’s room. The garden outside of Auggie’s Brooklyn brownst
one looked so realistic. The wooden floor inside was worn, like it had really been lived in. Even the window sills were a bit dirty, just like you’d expect them to be in a city. The level of detail was mind-blowing.
That day, we watched the same scene being shot over and over again. It was fascinating to see how much work and time it took to get that one scene right, especially because each time they did it I thought, That was perfect! Leave it! And then they’d say, “take number 40” and try again.
Todd asked for our “notes” and although there was nothing significantly wrong, we gave him some feedback. For example, they had Auggie talking on the phone, so we told them that even with the hearing aid, that doesn’t really work for Nathaniel. We also mentioned that we thought Auggie’s eyes would look more realistic if they were a little droopier.
Jacob Tremblay was doing a great job, and I told him that I liked how he didn’t move his head much. He said he’d been worried about that stiffness, which was due to the prosthetic face being uncomfortable and restricting his movement. But because of his trach and hearing aid—so many attachments—Nathaniel always walked carefully. Jacob’s performance was authentic. Both heads were fragile.
Todd introduced us to the rest of the cast too. I was pleasantly surprised by Owen Wilson, who played Auggie’s father and is a real what-you-see-is-what-you-get kind of guy. He made jokes with the kids and high-fived them. When Jacob (my son, not the actor Jacob Tremblay) exclaimed, “You sound like Lightning McQueen!” he replied, “I am Lightning McQueen!” and made a ka-chow sound that we all recognized from the movie Cars. He told us that Cars 3 would be coming out soon, and it was cool to hear that news straight from the mouth of one of the movie’s stars.
Jacob also talked to Izabela Vidovic, who plays Auggie’s sister Via, about what it’s like to have a sibling like Nathaniel. He suggested she emphasize the part when she’s slightly jealous of how Auggie gets more attention, but then devastated when he’s hurt by a bully. I heard him say to her, “You gotta show how intense that is.”
Perhaps naïvely, I’d expected to have a special connection with Julia Roberts. She was charming, kind, and thoughtful, even bringing my kids board games and gifts, but I’d expected more. Here she was, playing the mother of a child with Treacher Collins, and I was such a mother. Even more, at the time I was cancer-bald and Nathaniel was still swollen. In my fantasy, Julia Roberts said to me, “This is so hard. As a mother, I feel your pain,” and maybe gave me a hug. But there was a wall between us—even when she shook my hand, there was no squeeze. No feeling of connection or trust.
Later, when I had time to mull it over, I understood. She may be extremely talented at playing a great, caring mom, but she is a professional actress and she was at work. I wasn’t necessarily relevant to that. I noticed that she spent every break with her own children, so I could see the loving mom in her. Most likely, that was her priority, and bonding with me wasn’t part of her process.
Todd brought us to the makeup trailer, where photos of Nathaniel hung on the wall. While we were there, a makeup artist showed us the elaborate process to create Auggie’s face. Nathaniel had been very excited to see how they turned Jacob into Auggie and he wasn’t disappointed. The transformation wasn’t just a matter of skillfully applying some makeup: Strategic contouring couldn’t come close to what was required. There was an entire fake head, with a wig that was attached to a mold of Jacob’s face. An inch-high layer of goop was spread onto the mold and had to be redone every day. Hidden under the gooey material was a mechanism that ran from one eye down to his hand, where there was a button he pressed to make his eye droop whenever the camera was on. Jacob said it was really hot in the mask.
I couldn’t help thinking of the irony: It must have been very expensive to make Jacob’s prosthetic face. If the movie’s producers had hired someone with Treacher Collins, they could have used all that money to pay for surgery on the faces of twenty kids who needed help. If you look at it as “face-changing money,” was this the best way to spend it? When Russel and I discussed it, I told him I didn’t think this would go over well in the community; there was already online buzz on the topic. But then we considered that raising awareness about kids with facial differences was the more valuable investment. How to achieve that was best left to the pros. Besides, it was difficult to imagine anything surpassing the authenticity Jacob Tremblay achieved as Auggie, even wearing that uncomfortable mask.
We were all getting tired so we headed back to our hotel. The next morning we had breakfast with the whole cast. All the kids, even if they weren’t shooting that day, showed up to meet Nathaniel. Then we hurried back to Seattle because I had to be at the hospital for chemo at 2:00. My Hollywood life.
Nathaniel: When I first talked to Jacob Tremblay, he had the Auggie Pullman mask on. It was strange talking to a kid who didn’t have Treacher Collins but looked exactly like he did, but I almost forgot it was a mask because the way someone looks isn’t a big deal to me. Well, it wasn’t a big deal until they took it off: It looked like they were pulling his actual face off! Yeah, it was creepy, but boy would it have been more convenient to be able to peel off my face and call it a day than endure six months of surgeries, screws, and being in a cage.
We were on set for eight hours. After seeing how little of the story they shot in that time, I don’t even know what anyone was thinking when they had me audition for Auggie! There’s no way I could have spent day after day going slowly through the scenes; I would have lost my mind. It made me appreciate movies much more. The Wonder movie is only an hour and a half, but making it took months. What I learned from meeting Jacob was that it’s not as easy as people think. Now if I don’t like a movie, I’m inclined to blame the script. Those actors are endurance athletes!
30. Made Whole Again
Before Nathaniel got his trach out, there was a less significant port to have removed: mine. It connected a catheter to a vein so they didn’t have to poke me with a needle to insert an IV every time they gave me chemo. The first time I had cancer, when I finished chemo, I drove myself to the appointment to get the port removed because Russel was traveling and my mother-in-law was taking care of the kids. Since I didn’t have the luxury of an escort and would be driving myself home, the doctor couldn’t give me any sedatives. Sitting on the table, I watched as he gave me a local anesthetic, then chatted with him as he took out a scalpel. I winced, but kept talking, when I saw how long the tube he pulled out of me was. It was not a pleasant sensation, but I got strength from knowing that I’d soon be going home to my kids. When the doctor was finished, I waited for about an hour to make sure there were no blood clots, then I drove home.
I planned on doing the same thing this time around. A couple weeks before Thanksgiving, I drove myself to the hospital. When I checked in, they asked me who was driving me home. I lied and said my father was waiting for me downstairs. When they were about to put me under, I told them it was unnecessary. “I can just watch,” I said. “My doctor let me stay awake last time.”
This doctor wouldn’t allow it. “This is a surgical procedure. We’re going to give you a sedative.”
When I woke up, the nurse told me to call my father.
“Oh, that’s okay,” I said. “He’s meeting me downstairs.”
“I have to physically see him,” she insisted. “He has to sign the release form.”
I dialed my own cell phone number and pretended to have a conversation with my dad, who was definitely not downstairs, or even in the country. He was probably watering tomatoes in Sanok. Then I told the busy signal at the other end of the line to call me back because I was ready to go and to give my mother my love, before walking back to the nurses’ station, where they were eating lunch. “My father is on a walk,” I said. “Please enjoy your lunch. I’ll go meet him and bring him up here to sign me out.”
Then I went downstairs and drove myself home, feeling guilty and a little proud.
Our Thanksgiving tradition was to deep-fry a turk
ey. In North Carolina, that’s how all of our neighbors had cooked theirs. I’d had my doubts, so one year I roasted one bird in the oven while Russel fried another in peanut oil. We had a lot of guests that year, and when dinner was over, the deep-fried turkey was picked clean and my roast turkey was basically untouched. We never looked back.
This was our first Thanksgiving in Seattle. It was raining, of course. Russel put a tarp over part of the backyard to shelter the deep fryer while the rest of us, including my parents, who were visiting from Poland, sat on the porch. Jacob made all the side dishes, and I was his sous chef. It was still hard for Nathaniel to chew, so we cut up tiny pieces of turkey and mixed them into the mashed potatoes. Normally, Nathaniel doesn’t like to eat food his brother made. He says he doesn’t want to give his brother the satisfactionof having fed the family, but that Thanksgiving was the first time he didn’t refuse to eat food Jacob had prepared.
Every year we like to go around the table and say what we’re thankful for. This year it was a no-brainer. Every person at the table gave some form of thanks for everyone’s good health. On previous Thanksgivings, we’d turned our attention outward, but this year we’d all had to be focused inward. I told my family I hoped we could put all our worries behind us and look forward to a future without any drama.
The next day, Jacob and I drove a mile up the street to where a guy was selling Christmas trees on a corner. Being native to the Pacific Northwest, these trees were thick and full, like in a storybook, and they smelled delicious. The boys love decorating the tree, though we call it a “Hannumas tree,” and adorn it with blue ornaments, one shaped like a little menorah, and a sign that says “Happy Hanukkah.” We have a video of Nathaniel from that year, standing in front of the tree and belting out the Miley Cyrus song “Wrecking Ball” with my dad in the background, cleaning wax off the menorah for Hanukkah, which would begin on Christmas Eve that year. After all we’d been through, we were all home together, healthy and full of joy.
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