This other family, however, had all of our troubles but none of that support, none of those opportunities. Some people aren’t given the same chances in life. Take my parents: They weren’t lazy or stupid—their options were limited. And I learned so much from my mother, a simple woman who never graduated from college. Now, when I look back, I thank God this family was able to get what they needed. Just because I didn’t get the same things didn’t mean they shouldn’t have them.
When I see immigrants, I know that they came here for a better life. I moved to this country to marry the man I love, so why shouldn’t other people be able to find the same happiness? Who am I to judge who is worthy to thrive in America? Now, after all these years, I want everyone to get the help they need. I worry about what would happen to a child with Treacher Collins without any resources, either personally or from the government. If someone needs our help, they should get it, no questions asked.
After years of moving around the country chasing jobs and doctors, we have settled in Seattle, where I teach exercise classes, work at Lululemon, and take our four dogs for long outings at the dog park. (We got Coda, our fourth, during my cancer treatment. I wanted to have two male dogs and two females. For balance, of course.) In our backyard, there are wild rabbits that burrow in the lawn and drive the dogs mad. I love mowing the lawn, and I know where to be careful because the rabbits might be hiding. I know exactly how that mama rabbit feels, safely tucked under the warm earth, biding her time until her babies are strong enough to emerge into the light.
For the first time, Nathaniel is taking after-school classes. He tried tae kwon do when he was little, but he had to wear a helmet, and to do that, he had to take off his hearing aid, and with his hearing aid off, the class was hard to follow. Now he and Jacob are taking tae kwon do together. It’s a hard-core class, but he looks forward to it. He says he never realized how hard it is to do a push-up. At home, he practices the combinations of moves, and is dreaming of getting his black belt and becoming a spy. I sit and watch the classes, not because I am worried that he’ll get hurt (though I will be nervous when he gets to sparring!), but because, and I hope he’ll let me say this, watching him is like Comedy Central.
The boys have also started Hebrew school to prepare for their bar mitzvahs, but when we sat down with Nathaniel to talk about the time and effort that was involved, he got very upset. He said, “It’s so much work and time, and I don’t even know if I believe in God! If there’s a God, why would I have Treacher Collins?” I was surprised. Nathaniel had never talked about God before; he’d never asked why God gave him Treacher Collins. He just did what needed to be done.
In our family, we didn’t really talk about God outside of when we were in temple. Getting older means questioning our lives. Asking “why me?” is a part of growing up, and to be Jewish is to ask questions. To have him ask us this seemed normal, but I can’t help thinking that his hesitation is also about the time commitment. It’s much more appealing to play video games than to learn to read the Torah. For Nathaniel, questioning God went hand-in-hand with being too lazy for Hebrew school.
Jacob is an amazing lacrosse player; Nathaniel entertains himself by imagining stories. Jacob loves movement; Nathaniel loves stillness. For a long time, we urged Nathaniel to support his brother by going to one of his games, but he always protested, “No, this is the biggest punishment you could give me. They just run around the field with those stupid sticks. It’s the most boring thing I could imagine, and if I come, I’m bringing my iPad.”
Russel said no to the iPad. Jacob said, “It would mean a lot to me if you came. I do stuff to support you.”
Finally, one Saturday, Nathaniel said, “I’m coming to Jacob’s game today, Mom.” Then he winked at me.
I was thinking, Wow, what changed?
Later, at the game, he told me, “Dad’s going to give me $50 if I watch the game and cheer.” Bribery—a parent’s last lifeline. Nathaniel set himself up on a chair and yelled, “Hustle, Jacob!” Jacob plays goalie. There was nobody remotely near him, but Nathaniel kept shouting, “Jacob, you got this! Hustle!” Then he turned to me and said, “The more I scream, the sooner I get paid.”
For Nathaniel to breathe independently was a massive, years-long medical accomplishment. It was also, on no smaller scale, a triumph of strength and will for a very young boy. Nathaniel will continue to grow and broaden his independence. For instance, I want him to learn how to take care of his hearing aid. It was a relatively small concern before, but now that we’ve conquered so many other challenges, it’s moved to the forefront. I also want him to clean his room. It doesn’t feel any bigger than that.
His medical journey isn’t over. The bone structure of his face doesn’t grow with the rest of his body, and his jaw will just stay where it is. He’ll have one more jaw distraction when he stops growing, probably when he’s about eighteen, and he’ll need a couple of procedures to keep his airway open. We’ll try giving him implants around his eyes again. And he desperately needs some dental work.
And then there’s his ears, or lack thereof. Russel and I laugh because it seems like having plastic surgery to create nonfunctioning ears is important to a lot of parents of children with Treacher Collins, but it’s the last thing on our list. Nathaniel says he doesn’t want them, so unless that changes, we won’t do it. None of the surgeries he had were for cosmetic reasons, for the purpose of making him look “normal.” I support people who undergo surgeries to correct facial differences, but I also want to show what it looks like to love how you look, no matter what. I want it to be normal to be different and proud.
Recently, Russel took Nathaniel in for a follow-up appointment with Dr. Hopper. He called afterward to say, “Dr. Hopper said he’d like to see us in a year.”
A year. Just two summers ago, Nathaniel was going to a doctor almost every day. For us, a year feels like a lifetime.
A day later I went to see my new oncologist, Dr. Smith. Sadly, Dr. Press had lost his battle with a brain tumor, and I grieved him as one can only grieve the person who saved your life. At Dr. Smith’s office, I spent four hours going from one floor to another, having various tests done. At the end of all of that, Dr. Smith showed me a preliminary report. He explained, “This is a miracle. Your blood doesn’t show signs that you had cancer or chemo. You are the healthiest person I’ve ever seen. Keep doing whatever you’re doing.”
Then, unbelievably, he said, “I don’t want to see you for another year.” The exact same words that Nathaniel’s doctor had spoken. Two clean bills of health.
The attention I used to give Nathaniel was physical, cleaning him and taking care of his medical needs. Now that I’m done with that, he still gets my full attention, especially on the commute to tae kwon do, when he talks to me about video game characters—a lot. But he also tells me about his dreams of being a veterinarian. He wants us to have a business together: He’ll be the vet and I’ll be the groomer. He’s convinced it’s going to happen. Either that, or he’ll be a spy; you know, because there’s so much overlap in those sets of skills.
Jacob has his own transition to make. Looking out for Nathaniel, being responsible for his brother’s well-being has been part of his life, just like being born with Treacher Collins is part of Nathaniel’s. Between his brother’s surgeries and my cancer, Jacob grew up accustomed to worrying, which is a habit that doesn’t disappear overnight. He’s still haunted, even by minor things, and when he gets stressed out about a test or some everyday issue, he has flashbacks to the scariest moments with me and Nathaniel. In a way, it’s his turn to process. As he says, “I’m a bit scarred. But, like Nathaniel’s scars, mine give me character.” Unlike Nathaniel, Jacob wants to live far away from us when he grows up, in North Carolina or San Diego. He wants to be an oncologist researching a cure for cancer.
I used to have anxiety every day. My chest always hurt, a weird pinching pain. I was so emotionally and physically exhausted that I couldn’t get myself up and about, so I’d
lie in bed, something I considered to be a “bad” thing that I did. It wasn’t necessarily depression, I was just overwhelmed. Or maybe my body was tired from the chemo, but for a while there I’d lie down whenever I could.
It took me the first eight to ten years of Nathaniel’s life to overcome that constant state of panic. I had to retrain my brain. I don’t nap as much as I used to, but the best way for me to relax and restore myself is still to crawl in bed, surround myself with animals, and shut down my brain. Sometimes I ask my kids what heaven would be for them, if heaven is a moment in which you would happily live for the rest of forever. Jacob says that for him, heaven is being on the lacrosse field with his teammates. For Nathaniel, it’s being in his room, playing with Legos, with the dogs watching him.
My heaven is taking a nap surrounded by the beating hearts of the dogs: Snowball on my head, Brownie and Smokey next to my thighs, and Coda next to my heart.
Russel and I married young, started our family right away, and immediately entered a parallel universe where everything was foreign and scary. We were in survival mode for so long. How did we find time to love each other and be a married couple? I never thought about our relationship. The only thing I was thinking was, How can we be there for this fragile, sick baby? The thought of talking about us or even fighting didn’t cross my mind. And all the love I showed was through Nathaniel. We were caring for him together and giving him the best life we could.
That was my marriage: our shared sense of love and duty. I couldn’t have done it without Russel, and my love for him swelled when I saw how gentle and calm he was, and how much strength he had in stressful situations. He literally saved Nathaniel’s life many times. He had his moments—we both did—but I saw him as a superman. After sleepless nights caring for our son, he’d go to work exhausted but determined to provide for us. Nathaniel, and later Jacob, were our bond—they kept us both sane and together.
Russel brings me coffee in bed and lets me sleep late. I cook his meals, do his laundry, and take care of our kids. We show love by the silent choices we make. We don’t go on dates; we’re happier when the kids are with us. Even if we do go out together alone—and we have tried more than once—all we do is talk about the boys and how much we miss them. So instead, we go to spin class together, grab a juice, or watch a movie. How did we find time to love each other and be married? I don’t know the answer to that, except that we had to each love the other one for the sacrifices they made.
Lately, we have gravitated to a new nightly routine. We sit together on the couch and watch each other’s favorite shows. For Russel, that’s Iron Chef and Beat Bobby Flay, and for me, it’s House Hunters. He sits in his spot with Smokey, and I’m with the other three dogs. We’re like old people, having a glass of wine and savoring our well-earned leisure.
Nathaniel: The surgeries haven’t affected me all that much mentally. I guess I handle pain better and differently, so that makes some things easier. Mostly, I avoid talking about my medical experiences. It’s not because talking brings back any kind of trauma. But my surgeries already took up so much of my time and they all blend together, so I don’t have very many specific memories, or much to say about the annoying need to be fixed. I’m definitely an expert on what it’s like being in a hospital and how a basic surgery goes. My recent big surgeries are still fresh in my mind, but the ones before that have faded and jumbled together. Chances are that by the time I’m thirty or so, things like doctors, hospitals, and infections will all be in the past, and the memories will be even smaller and more insignificant.
Our family has gone through more than most people, but we’re a “normal” family now. Or maybe we used to be a normal family under extraordinary circumstances and now we’re a normal family under normal circumstances. I don’t think we’re extraordinary people, except maybe my mom, because she did so much of the worrying and had to deal with medical stuff that really grossed her out. Either way, who I am will never change. Treacher Collins doesn’t define me. What defines all of us is how we face what we’ve been given. I’m Nathaniel. I’m not normal, and neither are you.
I played piano for my entire youth, for many hours, every day, until I moved to America. When Nathaniel was born, he became the center of my world and I left piano behind. I don’t miss it, but I am glad for what I took from it: commitment, striving for excellence, appreciating art and beauty. We’ve often said that Nathaniel spent enough time at doctors, in the hospital, and recovering to become a concert pianist. But I was a concert pianist and look where it got me! My point is that something that seems central to your world can easily be eclipsed by time and chance. Nathaniel is right: His trach and all that went with it will recede into the past, but he is stronger for all those experiences and that strength will serve him forever.
When Nathaniel used to check in at New York hospitals, the nurse always checked his vitals and went through a list of questions to make sure he was healthy enough for surgery. When he got to be a certain age, they added a series of questions about his home life, things like: Is anyone touching you inappropriately at home? At school? Do you ever think about suicide? They ask the parents to step out of the room so the child has a chance to report abuse.
When Nathaniel was eight or nine, the nurse came out of the prep room crying.
“What did he do? What happened?” I asked, understandably concerned.
The nurse, who knew what we’d been through, said, “When I asked him if he’d ever thought about hurting himself, he said, ‘That might be the stupidest question I’ve heard in my life.’ So I asked what he meant by that and he replied, ‘I have the greatest life ever. I have an awesome mom and dad and brother. I have a dog named Smokey. Why would I hurt myself? My life is awesome.’”
For the first thirteen years of Nathaniel’s life, I longed for the elusive state of what I thought was normal, whatever that was. For us, it never had to do with what anyone else wanted or expected of us, but there was a freedom that I saw in the people around us. I wanted that for our whole family. In a way we achieved that freedom when Nathaniel got rid of his trach. But even if that hadn’t been an option or a success, we would have continued to strive for the best possible lives, to find peace in every day, and to thank God for what we were given.
afterword:
swimming like a fish
Russel took Nathaniel to San Diego for his eighth-grade spring break. He’s taken lots of trips with Jacob, mostly for sports, and he wanted to take Nathaniel on a vacation that didn’t have anything to do with doctors’ appointments. They went to SeaWorld, where you can swim with the dolphins, and at the end of the first day, they Skyped me to report back.
Russel said, “We beat this thing—we got through it. He’s breathing on his own! The horrible halo, everything, it was all worth it.”
Nathaniel chimed in, “It was awesome!”
Russel laughed. “The minute it was over, this guy wanted to ride the roller coaster. It was a lot more emotional and rewarding for me than it was for him.”
We always had doubts: Should we put him through this? Did we push too hard? Was it worth the risk? Swimming with the dolphins was something we had only dreamed Nathaniel would be able to do someday. This was true validation that we had made the right choices. Our son was on a dolphin’s back, alive and thriving. He refused to define himself by what he’d been through.
Nathaniel: We walked in water up to our chests out to the middle of a large pool. We were standing on a ledge, and the water on both sides of us was a lot deeper, maybe thirty feet, the way the dolphins like it. The trainers lined us up and, on cue, a dolphin swam up to each of us. We gave them commands and fed them fish when they responded. Then we were each told to put our arms around a dolphin, and they carried us across the pool. It was a fast ride, maybe a few seconds, though it probably wasn’t the dolphin’s full speed. It was amazing to be among those animals—you could tell that they were as smart as humans. It was nothing they did—you could just feel it.
I couldn’t have gone into water that deep, with splashy animals like that, when I had a trach. But I don’t plan to go through my life saying, “I couldn’t do this before and now I can.” That would be kind of the opposite of getting upset about the things you can’t do, and I don’t do that either. I’m more an in-the-moment kind of guy.
On Fridays, the boys join Russel and me in front of the TV for movie night. The kids give me a list of the candy they want me to buy, we make popcorn (one of the only smells Nathaniel can identify is butter), and we sit together in our tiny front room, covered in blankets and dogs, always in the same spots. Nathaniel has a big, round chair that he drags in from the playroom. Jacob pulls in a smaller black chair and, because he’s closest to the ground, the dogs are always after his popcorn. He whispers, “You had enough! You had enough!”
Smokey sits with Russel and watches intently, waiting for an animal to come on screen; I learned from Smokey that almost every movie has an animal in it. When one finally appears, he starts growling. He’s a movie talker—Nathaniel can’t stand it because his hearing aid makes it hard for him to separate the sounds from the movie and other noise. Russel is in charge of keeping Smokey’s enthusiasm under control, but truth is, I’m a far worse movie talker than Smokey. “I can’t believe that happened!” I’ll say. “Oh my gosh!”
Nathaniel will reprimand me. “Shhhh, Mom! This is why I don’t like to go out to the movies—because of people like you.”
The dogs dive between us to score dropped popcorn kernels. Russel brings me an extra blanket. Everyone’s together and it’s just great.
acknowledgments
There are so many people to thank that I simply can’t thank each of you individually. You know who you are, and if you don’t see your name on these pages, please know that I didn’t forget you and I love you.
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