Beauty is an accident just as much as Treacher Collins is an accident, but either way, your appearance shapes you by shaping how people react to you. When Russel first noticed me, I was walking around Southampton wearing a big floppy hat and black bathing suit, having my Audrey Hepburn moment. I enjoyed being looked at, being a young girl and feeling pretty. Seeing how people responded to Nathaniel changed my relationship with beauty. People put so much stock in it, and here I was with a child who would never fit into the norms. I stopped seeing beauty as an external quality. Beauty, to me, became the people who reacted to my baby with care, love, hope, and joy.
One way I found to think positive was to wear my hot, uncomfortable, ugly wig most of the time. It was summer in North Carolina, but I never went outside without it, hiding my baldness not because I wanted to look beautiful, but so I wouldn’t have to see people’s reactions to me. It wasn’t a matter of vanity; I didn’t want to have to explain that I had cancer because I didn’t want their pity. I had never wanted it for Nathaniel and I didn’t want it for myself. I hate pity.
I’d deliberately shifted from having one foot in the coffin to convincing myself I was indestructible. No longer would I let myself entertain the possibility of failure. I didn’t think it through at the time, but somewhere was the instinct that if I looked perfectly healthy and everyone saw me that way, it would keep me in that frame of mind.
Nathaniel: I don’t overthink my appearance. When I wake up I don’t stare at the mirror. I just feel like myself. I don’t even notice my scars unless I’m focusing on them. I see what I want to see. And when it comes to Treacher Collins, I find the positive. I can do things other kids can’t do. I can turn off my hearing aid when my brother is being annoying, and because my BAHA has Bluetooth, I can listen to music without headphones. That’s right—I can play music in my head. Pretty bionic.
And for some reason, one feature of Treacher Collins is that I have extra hair on my body, including my face. My mom asked if I wanted to shave the sideburns on my cheeks, but I like them. I’m not trying to look like everyone else. I’d rather look like Wolverine. Also, considering I have a fairly severe case of Treacher Collins, I say I’m pretty hot.
On doctor’s orders, I avoided public places while I was undergoing chemo. My immune system was vulnerable. My mouth had blisters and my gums were bleeding. My teeth turned yellow and felt loose. I looked like a heroin addict.
The only way I know I tried to be a good mother during that time is because in our photo albums there are pictures of the kids painting the wooden fence in the backyard, and I know that means I still tried to give them fun things to do. But what I remember most was being tired. All the time. Nathaniel was always content to play with his trains, but Jacob, being only six months old, demanded more attention, so I napped when he napped. Sometimes I would pull out every toy in the house, lie down on the floor, and rest while they played by themselves. Jacob, who needed more cuddling than Nathaniel ever had, would crawl on top of me while I slept.
I was taking care of two small children, trying to cook and give them baths and make sure they were entertained. I did my best, but it was a difficult time. When I look back on photos of myself from that time, I see a woman drugged up on painkillers, trying to come back from the dead. I remember driving in my car with the boys, Jacob screaming in his car seat because he was in that phase where he hated being restrained by the seatbelt. When talking to him calmly failed, and singing my favorite silly Polish song about a cucumber failed, sometimes I found myself screaming along with him.
Ultimately, the message that I found in my illness was that God was telling me to slow down and take care of myself. I stopped bemoaning my fate and started living. I went outside for fresh air. I bought a juicer and started paying closer attention to what I ate. I tried to send out positive energy and to surround myself with it. For me, forgiving was part of that. I was still plagued by the same envy that I had felt when Nathaniel was born. I saw women who had jobs and vacations, with gym memberships and pretty clothes and healthy, “normal” children who could frolic in the pool all day long. If I held on to that envy, I would never be a happy person. I had a second chance to live and it was up to me to be happy or sad, to enjoy the sunshine or see a cloud on the horizon.
The night after Donna didn’t show up for chemo, I lay in bed and made God a promise. I know you’re there. I know you’re listening. If you let me live, I can’t promise I’ll go to church every Sunday. I don’t even know what religion you prefer. (I’d seen many different religions in the chemo room and still couldn’t find a reason that one idea of God was better than another.) But I promise you that if I live, I’ll give back. I’ll do good. I’ll be a good person and I won’t expect anything in return. I’ll do something good every day.
When I was first diagnosed with cancer, the doctor had told me how serious my condition was. But he also pointed out that I was young and my body was strong, which worked in my favor. The chemo hadn’t killed me, so it had cured me. The day of my final treatment, the nurses in the chemo room gave me a diploma to celebrate my graduation. I gave each of them an infinity necklace studded with cubic zirconia. I liked the infinity sign and what it suggested about the circle of life. I wrote each of them a note thanking them for helping me.
I survived, I believe God wanted me to live, and I give thanks for that. This is obviously a problematic way of thinking. I didn’t believe that God wanted Donna to die, but it was useless to overthink it. I was in survival mode. I needed a way to cope, and I found strength in the combination of my voodoo psychology and my belief that God had a plan and that he heard me.
14. We’ve Got This
Being a mom was almost taken away from me, and I had faced the realistic possibility that someone else might raise my kids because I wasn’t around. I’d been under the surface, almost at the bottom, without knowing if I’d ever come up. As I made my way back to sunlight, I clearly saw what was most important to me. I was so grateful to have more time with my children, and I wanted to give them a happy life. Cancer inspired me to be a better mother.
With a newborn baby, Nathaniel’s medical encumbrances, and my illness, the boys and I hadn’t ventured far from the house for the first year of Jacob’s life. But gradually I felt stronger and started planning outings for us. We weren’t exactly foraging for mushrooms, but we spent lots of time at the local discovery museum. There was a big pile of dirt where they could dig, and water tables where they could pretend to pan for gold. When the boys lost themselves in exploration, or as I collected books and stickers on a topic like butterflies or spiders, those were the times when I felt like the mother I had always wanted to be, replicating a version of the happy childhood I remembered. And in spite of my constant anxiety, I refused to treat Nathaniel as sickly or fragile. I didn’t want that to be part of his identity.
Then I found a dream trip for the boys. There was a Thomas the Tank Engine–themed week at Tweetsie Railroad, an amusement park about two hours outside Charlotte. We would ride a life-sized Thomas through the Blue Ridge mountains, there would be storytelling, and afterward, if we were up to it, we could try out classic rides like a carousel and a Ferris wheel.
The Day Out With Thomas was the most ambitious outing our family had ever made. It was a long-awaited treat for us—Nathaniel, three years old, had recovered from his most recent surgery, and one-year-old Jacob was just getting big enough to enjoy such excursions. I was done with chemo and starting to feel stronger, but still wearing a wig.
The first thing that went wrong was that Jacob decided to hurl his pacifier out the train window—then immediately regretted that move. Being a toddler is hard that way. Jacob expressed his regret by howling for the rest of the ride. This was a disaster, though not on the scale of the hearing aid falling into the toilet full of pee.
Every parent has been there: trying to calm one child while trying to ensure the other one gets to enjoy what was supposed to be a fun day. Then the train encountered
a tree that had fallen across the tracks. We had to stop and return to the station going backwards. At the time, I assumed this was another hitch in our plans, but in hindsight it seems very possible that it was a planned part of the ride, meant to add drama to our experience. Not that we needed it—we were making plenty of drama all on our own.
It looked like our luck was changing (or so we thought). The gift shop at the end of the line had train-themed everything, and Russel miraculously found lollipops shaped like pacifiers. Soon Jacob was happily sucking and hopped up on sugar. So, toddler soothed at last, we started exploring the rest of the park.
We were contemplating our options when I noticed that the front of Nathaniel’s shirt was wet. At first I thought he was sweating, but Russel and I soon realized that every sip of water he took was spilling out of his stomach. It was surreal—his g-tube had become dislodged. What we felt was a little like the panic you might feel if a pipe burst in your house and water spurted out, ruining everything, except what was leaking was our child, and there was no shut-off valve. He was in danger of infection and dehydration. Not a drop of fluid was staying in his belly.
We called Pat Chibbaro, our nurse friend from NYU. Having sworn off the ENT who nearly killed Nathaniel, the only doctor we had in Charlotte was a pediatrician. Pat knew we weren’t eager to return to the hospital where we’d had such a bad experience. She had a friend who was a nurse practitioner in a children’s hospital in Chapel Hill and told us it was the best place to go.
With a cloth diaper around Nathaniel’s belly to soak up the fluids pouring out of him and Jacob loudly protesting being in the car seat, we sped from the Tweetsie Railroad to Chapel Hill, three hours away, where they replaced the g-tube. The procedure was horrendous but relatively fast. They had to rip it out, a sight that had made me faint in the past. The only upside was that they replaced it with a newer version that had to be changed more often, but was easier to put in.
Every mom has a story about a failed outing, right? The kid having a tantrum in the grocery store. The unappreciative toddler breaking down at the zoo. . . . I guess our day was kind of normal, if you substitute the stubbed toe with a dislodged g-tube.
Not long after the Thomas the Tank Engine debacle, we removed the g-tube for good. Nathaniel was getting enough food and gaining weight. I hadn’t used it to feed him for a couple of years, but we had kept it as a security blanket, knowing that sometime in the future, he would probably need it for another jaw surgery. Eventually I came to believe that putting in another one later would be better than having him endure the discomfort and risk of playing with it in. He already had a hearing aid and a trach to worry about, and we wanted him to be more carefree. Russel and I talked to Dr. McCarthy and he agreed.
Removing the g-tube was a very quick surgery, but a huge day—one fewer hole in Nathaniel’s body. Now he could go down the slide on his belly the way he wanted to, and he didn’t have to worry about it catching on the edge of a table. He had been cautious about this foreign part of his body for all of his first four years—“Be careful! Watch your g-tube!”—when all he should have been thinking about was playing and avoiding skinned knees.
I, too, was freed. No more flushing the tube so it wouldn’t get clogged. No more using silver nitrate on a stick to burn off the granulation tissue that would collect around it. No more medical procedures that were a foreign language to 99 percent of the world. We celebrated at Cheesecake Factory, Nathaniel’s favorite restaurant at the time. I felt like the sky was smiling. We were one more step closer to “normal.”
15. Teaching and Being Taught
I survived cancer, and then the bills started rolling in. Even after insurance, we owed thousands of dollars here and there as we met various deductibles and paid for medical supplies that inexplicably weren’t covered (like the BAHA hearing aid). As always, we were expected to pay up front and wait for insurance to reimburse us. Between Nathaniel’s most recent surgery, my cancer, and our big new mortgage, it was too much.
I kept telling Russel, “I’m stressed out. We have to sell the house and downsize.”
One day he came home and said, “I have an opportunity to make more money, but we would have to move to Connecticut.” From the start, I had been uncomfortable with the loan we’d taken out to build the house in Charlotte. I didn’t think we could afford it, and once I got sick, it became clear that we couldn’t. We didn’t even have the money for a dining room set, and that empty room bothered me.
All around us, people were living in large houses that were partially furnished. I wanted to downsize to something we could handle, and I wanted Russel to make more money so we were prepared for any other unpleasant surprises. This new job came with a bigger salary; it was closer to Nathaniel’s doctors in New York; and we’d be near good doctors if I got sick again. I had an oncologist at Hartford Hospital, and if something went wrong I knew the doctor I would see at Memorial Sloan Kettering. We agreed that he should accept the offer.
Russel moved up to Connecticut to start work, and a few weeks later he called from the corporate apartment he was staying in and announced, “I found the best house.” The house, a little Colonial dollhouse, was in West Hartford, with a hill right above it with nicer, more spacious homes. Apparently, the row of small houses had been built for the people who served the wealthy residents above. It sounded good enough to me: It had a garden and was right in the center of town, walking distance from an elementary school. It was in a great area, and houses in the neighborhood were selling as soon as they came on the market. There was a bidding war, and Russel bought it without my even seeing it.
My husband had a good career and earned a decent salary. His colleagues at the same level lived in big, beautiful homes. The first time I invited his new boss and his wife over for lunch, they didn’t say a word but I noticed a bit of discomfort in their eyes when they saw where we lived. It wasn’t what they expected from someone with Russel’s position. I wanted to be proud of my house too, but we still had medical bills to pay.
Whenever vacation time rolled around, our friends and acquaintances would tell us about the trips to Hawaii or Disneyland they were planning. They would ski in the winter and rent a beach house for the summer, all the flags of material success. We had none of that. Instead, we had doctors to visit, surgeries that had to happen when school wasn’t in session, and, as always, more bills to pay. We may not have been wealthy, but we had fresh tomatoes from the garden that I could pick and feed my kids, and, to my great relief, there were no gigantic black slugs to contend with.
For the first year or two after cancer, my goal was simply to make it to the next day. If I’d ever cared about having a fancy house, I didn’t now. It no longer mattered to me. If I couldn’t be happy without a better car, a better house, better furniture and clothes, I would never be happy. I decided to be happy with what I had, and the greatest treasures I had were my children.
We knew that when Nathaniel started kindergarten, he would be a surprise to his classmates. In the middle of the summer before school started, Russel contacted the principal, Dr. Nancy DePalma, and told her about Nathaniel. He sent photos of him and materials explaining Treacher Collins, and said we’d like to bring him in for a meeting. It was an upbeat, casual get-together. Russel took the lead, and we explained Nathaniel’s medical needs.
Dr. DePalma, a petite Italian American woman, happened to be the best principal that ever walked this planet. She said hi to all the parents at the door. She went from class to class, listening to teachers and greeting every kid by name. Even before we knew how engaged she was, when we first met her, she made it clear that she was thrilled to have Nathaniel at the school.
Russel told her that he had an idea. He said, “What if we write a letter to the school community? It could explain why Nathaniel looks the way he does. Maybe it would help everyone start off on the right foot.”
Dr. DePalma loved the idea, and when she read his draft, she said, “This is brilliant. I can’t wai
t.” Her praise felt surprisingly good—we were flying blind and hers was the first real affirmation that we weren’t completely blowing this parenting thing.
Russel wrote the letter from Nathaniel’s perspective. It began “Hi! My name is Nathaniel Newman. I am in your son’s/daughter’s class. I had a really great idea. You see, I figure by now your kid has maybe asked a few questions about me or talked about me when he/she came home from school today. Bet it would help if I told you a little more about myself.” The letter explained Treacher Collins syndrome in such a way that if parents read it to their children, they would both have all their questions answered:
TCS makes it so that when you’re growing in Mommy’s belly, the bones in your face forget to grow like the rest of your bones. What happened to me was a lot of my bones forgot to grow. AND I EVEN GREW SOME YOU’RE NOT SUPPOSED TO HAVE! They tell me that this sort of makes me a miracle! Cool, but a bit silly, because isn’t every kid in our class a miracle? Here is some of the different stuff about me:
—I have no ears. But here is the amazing part: I hear everything you do! The stuff inside my head that makes you hear (eardrums, bones, nerves) are all there. Just no flippy floppy ears on the outside. This is called microtia. How do I hear, you ask? I have an amazing thing called a BAHA hearing aid. I call it my magic ear. It’s a small brown thing that I wear on a colorful headband.
—I have no cheekbones and my eyes slant down because there aren’t enough bones holding up my eyeballs! They say they can fix this when I’m older. I’m not in a rush because that means another trip to NYU Medical Center. I’ve had like twenty surgeries there. I think that’s plenty for now!
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