It was 1989, and while he was away, Communism started to fall in Poland and, with it, the exchange rate. The money he brought back suddenly wasn’t even close to being enough for a car, but he did bring me a Barbie doll. She wore a blue leotard with a pink belt and had long blonde hair. I was very excited to have her, but my few hard-won toys didn’t mean as much to me as the wonderland that was right outside our back door. My fantasies of child-raising were about the backyard I’d played in as a child and the woods beyond it. I wanted my children to experience the same exploration and wonder that sparked my imagination at a young age.
I always planned to have lots of kids. As the oldest of six, I was always helping out with my siblings. My brother Michal, the fourth-born, is fifteen years younger than I am. Even though I went to music school every day after regular high school, after Michal was born I hurried home in between to see him. When I wasn’t home, my mother brought Michal with her everywhere, to weed the garden, to pick tomatoes. She’d lug a hand-me-down ExerSaucer around with her and let him bounce and watch. When I took over, I immediately pushed his stroller into the woods. We’d off-road it, bumping the stroller over tree roots and through gullies. This was our routine for the first few years of his life. I’d point to knotholes in the trees and tell him, “This is where the elves live. They go down through the tree to their underground world.” Then I’d kneel next to him and say, “Oh my God, I just saw a little elf! Did you see it scamper back into the tree? They’re so fast!”
Michal would say, “Oh yes, I saw his little hat.”
Michal is only eleven years older than Nathaniel, so in some ways Nathaniel felt like my second baby. No matter what his constraints, I wanted to explore the world with him just like I had with my little brother.
Our backyard in Charlotte had a patio and a sunny patch where Nathaniel and I planted a flower garden. Beyond the garden was a steep hill, at the top of which was a muddy play area. Every morning I brought my coffee to the top of the hill and slowly sipped it while Nathaniel played in the dirt with his trains and Tonka trucks. Making up stories about construction vehicles wasn’t exactly scintillating, but the warm, sunny mornings in the fresh air were exactly what I needed. Our neighborhood had a playground and a kiddie pool. This was Nathaniel’s first pool, and though I had to be very careful his trach didn’t get wet, he absolutely loved swimming.
Our life in North Carolina started to take shape. A few months after we moved, I finally passed my driver’s test, which opened up our world even more. We only had one car, so some days I would drop off Russel at work and then drive Nathaniel to story-time at the bookstore. There was a Thomas the Tank Engine table there where he was content to play for hours.
Nathaniel had come to love Thomas trains after his first jaw distraction, back in Long Island. After that first surgery, Nathaniel had to sit still for hours while nutrients slowly made their way through the g-tube into his body. His train table became his salvation. He got a new train or two after every surgery, and he had spent countless hours like that, slowly being fed and playing with the trains. Now he was thrilled to find his favorite hobby out in the world.
He wasn’t the only Thomas-obsessed kid, so he made a couple of “train” friends (the children’s version of poker buddies), and the mothers and I would smile at each other, sometimes exchanging sympathetic words about the brain-numbing effects of trains that speak but are otherwise plot-challenged.
In the evenings, when Russel and I cooked together, Nathaniel was perched in his high chair, eating alongside us. He still had a g-tube, but he was barely using it now. We kept it, as many Treacher Collins families do, in anticipation of emergencies or future jaw surgeries that might make it difficult for him to eat.
Every life comes with its own limitations and advantages: When I was young, mine were driven by where and when I was growing up. I’ll never forget the first Snickers bar that made it to our farm. I was six. We split it among all the cousins, and it was the best thing I’d ever tasted. No chocolate, rationed meat, a government that told us what our careers would be . . . none of this was upsetting because it was normal to me, my siblings, and everyone we knew.
Maybe “normal” is leading the same life as everyone around you, enjoying the same luxuries, encountering similar hardships. In the Long Island basement, I had felt isolated, chained by my difference. Feeling sorry for oneself comes from thinking you have it harder, that you’ve been dealt a worse hand, or that you somehow deserve a better one. But we can all look around and see both worse and better. We all, at some point, have to come to peace with our place on the spectrum. Russel and I struggled with this, the “why us?” of it all, and maybe we always will, but in Charlotte, for the first time I began to step back from that, coming to terms with the struggles and joys Nathaniel was bringing me, and trying to feel grateful and blessed at the same time.
Settling in Charlotte gave me the mental space to want a second child. Not only was I starting to get the hang of Nathaniel, but I had a few somewhat selfish reasons: First, I wanted Nathaniel to have a guardian angel, someone to protect him when I couldn’t. Second, I was afraid Nathaniel would never have children, so I would never have grandchildren. God knows how or why I was looking so far ahead, but there was no way I wanted to miss out on being a grandmother. Finally, maybe it was just the way I was raised, but I expected my children to take care of me when I got old. Being an only child to aging parents is a lot of responsibility, and I was nervous about putting that much pressure on one child.
Most of all, however, I wanted to have at least two kids so they could play with each other. When I was growing up, spending time with my siblings was one of my greatest joys. I’d thought about that ever since Jenna brought Emily to visit us in the basement. She’d also brought her second child, a newborn, and said how glad she was to have children close in age. She told me it was hard, but she was confident the reward would come later: They would always have each other.
For all my rationalizing, the simple truth was I just wanted another baby.
But there was one concern that we had to address: We didn’t want another child with Treacher Collins. It wasn’t that we couldn’t or wouldn’t love a second child with the condition—there was more than enough love in our hearts. What we didn’t have was the time, money, or emotional bandwidth. To give another child as much medical attention as Nathaniel required would have been too much for all of us.
Treacher Collins is a genetic mutation that presents along a continuum. On one end, a child might be born with droopy eyes, reduced cheekbones, and a smaller jaw, but nothing that causes medical issues. It gets worse with every generation that the gene is passed down, and we’ve even met parents who didn’t know they had the mutation until they gave birth to a child with it. Even though Nathaniel was a first generation Treacher Collins child, he didn’t have a mild case. Whatever could go wrong had gone wrong, and we didn’t want to take chances it could happen again.
The next time we drove up to NYU for a meeting with Nathaniel’s whole team—ENT, craniofacial specialist, psychologist, dental team, and pediatrician—we asked to meet with a geneticist to talk about a second child.
I was open about my concerns. “I want to try for another child,” I said, “but I’m scared.”
The geneticist ordered blood samples from me, Russel, and Nathaniel, but he told me that the only way to really find out if my next embryo would have Treacher Collins would be to get pregnant. And so I did.
Early in the pregnancy I had a chorionic villus sampling (CVS), a prenatal test that identifies chromosomal or genetic disorders in a fetus. It was nerve-wracking. Nathaniel and Russel waited outside the exam room door for me. We were hoping for a definitive answer, but although the test didn’t detect the mutation, the doctors wouldn’t make any promises. Whether we liked it or not, we would have to wait until the fetus grew more and they could do a detailed sonogram. Then, if it had Treacher Collins, we would have to decide whether to keep it or abort. We k
new we had that option, but I couldn’t say whether I would take it.
Sometimes people ask me what I would have done if I’d known early on about the problems Nathaniel would have. (People are actually surprisingly bold in asking this question.) Now that 3D and 4D sonograms are available, Treacher Collins is identified early in pregnancies, but back then, a fetus would have been too far along to terminate before any test could diagnose it. But if I’m playing the “if ” game: If I’d known in advance and had time to process that the baby had problems, I would have seriously considered continuing the pregnancy. I’m pro-choice, but it would have been hard for me to let go of a fetus if it was likely to survive. Knowing the good and bad in advance—that he would have severe issues, but that there was nothing wrong with his internal organs—I would have had time to prepare myself mentally and emotionally, research the syndrome, and line up the best doctors. The hardest part by far had been the initial shock of Nathaniel’s birth. When life takes a sudden, unexpected turn, we are asked to show what we are made of. But now—with perspective—I am astounded when I think about how much of the trauma was due to the surprise.
As I considered a second pregnancy, I was still a new mom, still recovering from the day of Nathaniel’s birth, and Nathaniel needed me 100 percent of the time. There was no way I could handle another child with similar needs. Russel and I were in agreement on this: We wanted to have as “normal” a parenting experience as possible. Emotionally, neither of us could watch a child go through what Nathaniel had again. If we could avoid bringing another child into the world who had to deal with the challenges he faced, we would. And—this is the most important part—Nathaniel agrees. Like many a first child, the last thing he wanted was to sacrifice his parents’ undivided attention.
I feel differently now, though. I’m older and more mature, and practically an expert on Treacher Collins. Both my boys are strong and independent, and there are so many more resources and new technologies available to families like ours. I can assuredly say that I could and would care for a baby with severe issues all over again. The person I was when Nathaniel was born would be astounded by the person I am now.
At six months, I had a 4D ultrasound that measured the fetus’s head, jaw, and ears. We could clearly see his features. An ear! The most noticeable trait in Treacher Collins is the malformed ear. The doctors still wouldn’t make any guarantees, but when I saw that ear I knew deep in my heart that this baby was okay.
Looking back, I remember being worried when I saw the ultrasounds of Nathaniel. These were standard ultrasounds, not the 3D and 4D ones they do nowadays. But in them, his nose looked disproportionately big for a baby. I told myself I was being ridiculous; I was a first-time mom, what did I know? Now, after having my concerns validated, I had stronger faith in my intuition, and my intuition told me not to worry about my second son.
In our family, the fact that our second son would be genetically “normal” meant that he was going to need less, and that he was going to get less. That would be his blessing and burden.
Nathaniel: What is normal? Maybe “normal” is what is possible. If someone could fly, it wouldn’t be normal because nobody else could do it. But nobody can fly, so nobody is abnormal. But nobody’s normal because everyone’s different. So “normal” only applies to minor, earthly things. Nothing as cool as being able to fly. Who wants that?
If people don’t see me as normal, they’re only seeing a tiny piece of me—the outside, from the neck up. But normal isn’t better. Flying isn’t normal, but it’s better than walking. Having four dogs isn’t normal, but it’s better than three. Then again, I’m biased because I have four dogs.
A few weeks before the 4D sonogram, we had gone in to meet with our local doctor, a very well-known and respected ENT we saw for breathing issues and emergencies. He looked at Nathaniel’s CT scan, the structure of his face, his muscles, and his bones, and said, “All my life I’ve done impossible things. I can do this. I can fix his airway and remove the trach.” He was utterly confident.
Nathaniel was two years old and the tracheostomy was his biggest constraint. The longer you keep a trach in, the longer you are dependent on it, and the more likely it is that you will have it for the rest of your life. From the very beginning, our overall goal was to get rid of it, and the sooner the better. Think of it: You don’t see a lot of people walking around with trachs. You don’t see doctors, teachers, waiters, judges—few people out there in the world, leading so-called normal lives and having normal careers—with a trach. On first meeting, people often assumed that our primary concern was Nathaniel’s appearance, but Russel and I weren’t worried about that in the least. For a long time he had just looked like himself to us, our sweet baby. What we wanted was for him to breathe without help. We wanted him to be free.
We called our doctors at NYU to ask what they thought about this new doctor and his proposal. They said that he was known to be a wonderful surgeon, and it was possible that he might have success where they had struggled. Dr. Bernstein had already tried to remove the trach three separate times, starting after Nathaniel’s first jaw distraction. Each time he tried, he had gone into the operating room with Nathaniel, and had come right back out fifteen minutes later. He’d say, “The bone is thicker than I thought, and it’s close to his brain. I can’t do it.”
Now Dr. Bernstein and our other doctors encouraged us to let the Charlotte doctor give it a try.
Just before the surgery, the doctor came out to the room where Russel and I were waiting. For some reason I noticed that he was wearing a white turtleneck under his scrubs.
“Let’s pray to Jesus Christ, so he guides my hand in the right direction,” he said, reaching for our hands. Russel and I looked at each other. I don’t like to mix religion and science, and I had never encountered a doctor who did, but there was no harm in being operated on by a good Christian man.
Russel said, “Praying never hurt.”
“From your mouth to God’s ears,” I said.
In the town where I grew up there were more churches than supermarkets. My parents were devout Catholics, and we went to church every Sunday morning. If I asked to sleep in (which I did), my parents made me go to services by myself in the afternoon. To be honest, I never liked church. It was the same thing over and over again, and they made you feel like everything you did was bad. As a teenager, I’d bring a Discman and hide in the back of the church where the organ player was. During the mass, while the priest rambled on about politics and how much money the church needed, I’d listen to music. Every Sunday the priest served Communion, and if you didn’t take a wafer, you were a sinner. Then there was confession. If I didn’t come up with any sins to confess, then in the church’s eyes I was a sinner, so I made up sins: “I lied to my mom. I told her I ate three pound cakes but I really ate two.” And then my sin was lying in confession. It didn’t make sense to me. The priest lived in a monastery with ten other men. They didn’t have wives or children. None of this added up to me. How and why were they experts on how we should live? But I believed in God and spoke to him often, and, my misgivings about Communion and confession aside, I liked the commitment and ritual of going to church.
Back in that little gastropub in Prague, when Russel and I had written down the names Nathaniel and Jakub, the question of religion had come up. “I know so much about Catholicism,” I said, “and it was a big part of my life growing up. I’d like our kids to be Catholic.”
Russel, who was raised in a secular Jewish family, countered, “I want them to learn about Judaism too.”
“But you didn’t practice as much as I did,” I said. “Your parents didn’t go to services once a week.” For Russel, those rituals weren’t as important as his Jewish identity, which was part of his daily life.
I suggested a compromise. “We both believe in one god, we just acknowledge it differently. Let’s have God decide. If our first child is a boy, let’s raise him and the rest of our children Jewish. I’ll do everything i
n my power to learn about your religion and to raise our children to follow it. And if God gives us a daughter, that means he decided we should raise all our kids Catholic.”
Russel agreed. “Okay, we’ll have God decide.” And we truly believed that God would take care of this decision for us.
When we found out we were having a boy, I was in shock for a couple of days. I would be leaving my religion behind. My children wouldn’t go to church, and my family and others in my hometown would fear for their souls. But I reminded myself that most religions come back to one god, with different ways of showing devotion. I didn’t feel a need to decide that one way was better than another.
In Poland we say, “The world is a theater. God is a director. You are an actor.” It’s okay that I don’t know in advance what the play is about. God is directing me. Anyway, if God is the director, he cast my children as Jews.
When we found out the baby was going to be a boy and therefore a Jew, we joined a temple in Hoboken and went to couples’ classes on Judaism twice a week until Nathaniel was born. I came to love how Judaism contemplates the big questions—the nature of God, the universe, life, death, why we are here, why bad things happen—without requiring you to believe in specific answers. Instead of being focused on the status of your soul, Judaism emphasizes ethics in daily life. Humans have freedom of choice, and we can choose obedience or disobedience, but God never wants to break his covenant with us—the promise to protect us—and so if we fail, we can always return to him. In Catholicism, by contrast, there is a right choice or a wrong choice. They tell you the right choice, and that’s what you’re supposed to do or you end up in Purgatory. Russel and I attended those classes for fun and enlightenment, oblivious to how soon we would be at God’s doorstep, questioning him and asking for guidance.
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