Russel grabbed the phone from me and gave the operator Hal’s address. Finally, the ambulance arrived and took us to a local hospital. I was worried because it wasn’t his regular hospital, and the stoma looked scary because it was still bleeding from Russel’s failed attempts. It didn’t take them long to put the trach back in, but I didn’t relax until they showed me that his oxygen level was good and I saw that he was comfortable. He fell asleep almost right away, and then I was fine. But I worried that it would happen again and was on high alert for a week or two after that.
Later I would look back at this as the moment I knew what role Russel would play in our family. I could handle the day-to-day, but in an emergency, I fell apart. Russel was very emotional—he’d often cry after a rough medical moment—but in an emergency he took charge. No matter how bad it got, no matter how tense and gross, Russel knew exactly how to manage the situation and how to keep Nathaniel safe until we got to a medical professional.
I met Russel when I was twenty-two years old. It was my fourth trip to America—I’d been coming for vacations, sponsored by an aunt, ever since I was nineteen. The summer we met, I’d just finished my third year of college in Poland. My cousin, who’d grown up in New York, got me a job as a nanny in the Hamptons.
My employers, Rich and Vanessa, were part of a wealthy summer circle. Maybe not the cream of the Hamptons crop—instead of mansions with private beaches they stayed in a hotel called Dune Deck that opened directly onto the ocean. My employer and her friends spent their days sitting in the sun by the pool, wearing Prada and Gucci, smoking and starving themselves. Some of these mothers brought babysitters with them and some didn’t, but all of them seemed to spend their time drinking wine at 10:30 in the morning, going shopping, or working out with their personal trainers. I watched my employer buy designer bags, then hide them under the bed so her husband wouldn’t know how much she’d spent. Now I recognize that behavior as a stereotype of the upper-class housewife, but then even that small gesture of indulgence and deceit was completely foreign to me.
These husbands and wives lived separate lives. Rich spent the week working in Manhattan and then arrived in the Hamptons on Thursday afternoon, played golf all day Friday and Saturday, and left on Sunday. He would go out with Vanessa at night, but didn’t find much time for their son, Hunter. The fourth summer I worked for them, the marriage appeared to be on the verge of collapse.
I wasn’t in the Hamptons to party and I took my job seriously. I wanted Hunter to have friends, so I’d invite the other kids to our room, make them a snack, then take them all to play ball. Some moms noticed and happily handed them over to me; others had no idea where their children were and didn’t seem to care. The dads were already off playing golf.
After three summers of this, my idea of America was this strange, privileged life, with its forgotten children. It made no sense to me. Then along came Russel.
Vanessa was the one who pointed him out to me. Except on weekends, my work finished around 7:00 P.M., so I had my evenings to myself. One night, Vanessa asked me my plans, and I told her I was going to read in my room.
She said, “We’ve got to find you a boyfriend!”
I’d never had a boyfriend before, not even close. I was raised as a strict Polish Catholic, and I didn’t have any plans to date. I thought that one day I would find a husband—I had no idea how—and that would be it. When some of the men who worked at the hotel would come by my room to ask me out, I was scared. My English wasn’t great. They didn’t know me. And some were twice my age! I figured the only reason they were knocking was because they were interested in sex, so I wouldn’t even open the door. When Vanessa explained that being asked out on dates was normal, even desirable, I still resisted. She wasn’t exactly my role model. Besides, I wasn’t planning on staying in America, so why would I want to get involved with someone just to leave in a few months? I was going to return to school, finish my studies, and become a music professor.
Vanessa kept pushing me to date. One day, while we were watching Hunter play basketball, she said, “There’s a nice Jewish boy who works here. He’s handsome and he went to law school. I think he likes you; you should give him a chance.” You could see everyone coming and going from where we were sitting, so when Russel happened to walk by, she pointed him out to me.
In spite of my disinterest, I started noticing him more and more. Russel stood out because he’d stop to pay attention to the kids whenever he walked past. He’d start up a game of tag with them or tussle with Vanessa’s dog. No one else did this—neither the men who tried to date me nor the children’s own parents.
My parents had always told me that children and animals can tell if a person is good. You can trust their instincts, so I knew that this guy who stopped to play with the kids had to be a good person.
There were some machinations going on behind the scenes. One night, one of the waitresses, Eileen, invited me to come with her to a bar up the road. Russel ordinarily worked at the restaurant at Dune Deck, but “coincidentally” he was bartending there that night.
Before then, we’d only had a few conversations over the heads of the children as he was on his way to work, while I was focused on making sure everyone was safe and having fun. Now, for the first time, we were both relaxed, sitting at the bar and talking with no distractions. This was easy for me, but it meant that Russel was a horrible bartender. At one point he even asked a friend of his to make his own drink—I would later find out it was because he didn’t want to interrupt our conversation.
I thought he was handsome. He was tall with dark hair, and he was always smiling. But what was most important was that the more we spoke, the more he confirmed my parents’ theory of dog and child character judgment. Of all the men who had asked me out, Russel was the only one who actually tried to get to know me. He asked me questions about myself, and I learned that, having completed law school, he had decided he didn’t want to be a lawyer. He was thirty-three years old and, by his own report, having an early midlife crisis. Recently divorced, he was sleeping on a friend’s couch while bartending and managing a golf course to pay back his student loans. If you ask him, he’ll say he was a loser.
The friend who owned the couch, Steven Dietz, told Russel, “This has to stop. This can’t be your life. You’re a good dude, I love you, but you gotta get a job.” Then Steven drove him to a bar in Westhampton named Starr Boggs after its celebrity chef. He went up to the manager and said, “This is my buddy, Russel. If you don’t give him a job I’m going to kill him.” That was how he’d started working at the tiki bar overlooking the dunes and serving vodka martinis to New York City housewives after their morning workouts.
At some point I asked him, “Where is your passion?”
He blushed and said, “Isn’t it a little too soon for me to express my passion?”
I tried again. “What are your interests? Is there something wrong with that question?”
He says he thought my broken English was adorable.
At the end of the night, he asked me to teach him some Polish words. I taught him how to say, “Hello, my name is Russel. It’s a pleasure to meet you,” and wrote out the pronunciation on the back of a taxicab business card. He still has it in a drawer, either for sentimental reasons or because his Polish hasn’t improved much in the last fifteen years. He was a very quick learner, but life got in the way.
After that night, I may have watched from the deck to see when his car pulled into the parking lot, but I’ll never admit it. He started asking me to go out with him, but I was old-fashioned and didn’t really think of myself as a person who did that. If I dated, it would be because I thought I’d met my husband, and now was not the time or place. I had school to finish.
But Russel is a force of nature and he finally won me over. I agreed to a proper date, and after that we slowly got to know each other better. Before I met Russel, I would visit my cousin in Manhattan on the weekends, but during the week I was very alone, so I was hap
py to have found someone who genuinely cared about me. Now I’d meet him when he showed up for work, and we’d talk and he’d play with Hunter before it was time for him to bartend or wait tables. As the summer went on, I began staying up late, waiting eagerly to see him. When his shift ended after midnight, he’d sneak over to my room, though I had strict rules for us. I was still very chaste, and I knew how gossipy the hotel staff was, so I didn’t want anyone to see him coming into my room.
I only had a small refrigerator, so while I couldn’t really cook for him, I always made him a snack. And he always ate it, whether he was hungry or not. We talked about our days, gossiped about the summer people, and just connected quickly and easily. Our romance lasted the whole summer, deepening as the weeks passed.
I was supposed to fly back to Poland on September 12, 2001. I’d spent a few days at my cousin’s apartment in Manhattan before returning home, and planned to head to my aunt’s in Westhampton for the last night before I departed. On the morning of 9/11, I was walking across town to Penn Station when I saw fire and smoke coming out of one of the Twin Towers. Something was happening, but I had no idea what. I headed underground into Penn Station, where I got caught up in a big crowd looking at train schedules and standing in line for tickets. At first it wasn’t clear that the trains were canceled, but more and more people gathered, and the lines didn’t move at all. Finally there was an announcement to evacuate. I don’t know how much time had passed, but when I’d walked into the station, it had been a sunny morning, and when I came out, the sky was overcast, dust was falling, and the Twin Towers had disappeared. People were running in all directions, and everything was closed. I didn’t have a cell phone, so I found a payphone and left a message for Russel. Then I got through to my mother in Poland, who told me that she was watching the news and they were saying it was a terrorist attack.
The tragedy of 9/11 brought Russel and me closer. My flight was delayed for almost a week, so he invited me to stay with him at his brother Hal’s house on Long Island, where he was living. I wasn’t entirely comfortable with the scenario, but I knew I needed to be with him. I said goodbye to my aunt and took my things to Long Island. In the days that followed, as the city mourned, we spent quiet time together, going to the beach or for a long drive. I met more of Russel’s family, and he made it clear that he was serious about us staying together. By the time I left for Poland, Russel had already bought a plane ticket to come visit me.
I went back to my fourth year of music school and settled into my routine. There was no Skype back then, so Russel called me every day, burning through international phone cards. After he finished his shift waiting tables, he would sit in his car in the driveway so as not to disturb Hal and his wife, Nancy, and wait until 1:00 a.m. so he could call when I was waking up in Poland. The switchboard phone at my music school dormitory was always answered by the house mother, and I taught Russel how to say, Dzien dobry Pani Haniu. Magda prosze? which meant, “Hello Mrs. Hania. Magda please?”
Then the house mother would open the door of her office and shout, “Magda, telefon!” and patch him through to my room.
When I came to the phone Russel would say, “I just want to be the first voice you hear when you wake up in the morning.” It was nice to be told I was missed and to be given a positive boost for the day. I felt special. I was learning to be in love, and to be loved.
After the horror show with the trach in Hal’s basement, the possibility of it getting dislodged constantly loomed over us. Nathaniel was getting old enough to start learning how to keep himself safe. Whenever he started to fiddle with his trach or his g-tube—we called them his buttons—I’d say, “No, don’t touch. It’s not a toy.” It was like what most parents teach a baby about a hot stove, except imagine that there are three burners on and the stove is within the baby’s reach at all times.
Nathaniel quickly learned to be careful, but he developed an allergy to a plastic part of the trach. It would get itchy, and sometimes he would pull it out when he scratched. Russel, who would have been an excellent doctor or nurse because he wasn’t the least bit squeamish, got the hang of changing it. But I always panicked and gagged, and though I could do it in an emergency, for a long time, I’d take Nathaniel to the doctor to do it if Russel wasn’t available. After about two years, I got so tired of the drive and the inconvenience, and I had seen it done so many times, that I learned to just suck it up and do it myself without freaking out.
Along with the normal developmental milestones—crawling, talking, doing puzzles, etc.—we had bigger ones we were trying to reach. Mileboulders. The first was feeding Nathaniel through his mouth.
Not long after we moved to Long Island, when Nathaniel was six months old, he had his first mandibular distraction, a surgery to try to expand his jaw and give him more room to eat. Each jaw distraction actually involved several surgeries: the first to put in the expansion device, the second to lock the expanded jaw in place, and the third to remove the device. His craniofacial surgeon, Dr. Joseph McCarthy, had, with colleagues, pioneered this surgery to help kids like Nathaniel. Dr. McCarthy was kind of a god in our new world.
Nathaniel would have around five more jaw distractions in the first eleven years of his life.
Nathaniel came home from the surgery with pins in his jaw that had to be turned every day in order to gently stretch the bone and allow new bone to fill the space. Pins. Gently. Stretch. These are the words the doctors used, and later it struck me how falsely yogic they are. Just a little baby acupuncture on a Sunday afternoon. A mother-baby yoga class. Yeah, not so much. This miracle of modern medicine looked and felt more like medieval torture.
Russel was the obvious choice to do the pin-turning, but often he was traveling and it fell to me. I would start the process by crying and throwing up (the first sign this wasn’t exactly a baby spa). Then, terrified that I would slip and hurt my baby, I would lie him down and kneel over him, my knees on his hands to prevent him from moving. (Forceful restraint: also not covered in mother-baby yoga manuals.) I would count to ten, then put the screwdriver in with one hand and hold his head with the other. I turned the screwdriver and could feel his jawbone stretching. Then blood would start dribbling down either side of his head. (Mother-baby yoga class officially up in flames.) I’d throw up again, then everything would be fine until the next day when I’d have to repeat this torture.
Nathaniel: When you think about it, it’s pretty crazy to be tortured by your own loving mother when you’re an infant. The same person who cuddles you 99 percent of the time then takes a screwdriver, sits on top of you, and hurts you. My mom says I cried in pain every time. I don’t remember any of it, but I have to think that because my parents did it with love, not out of anger or rage, I wasn’t psychologically damaged. My grandmother says that babies feel energy. So maybe these experiences scarred me. But maybe they made me strong. Maybe both. All I can report is that I’m okay so far.
8. To Eat, To Speak
Just because his jaw was now slightly bigger didn’t mean that Nathaniel automatically understood how to eat. I’d put baby food on a spoon and he’d hold it in his mouth, but he didn’t know that the idea was to swallow it. He’d never had to wrap his young head around the concept of swallowing. You’d think it would be instinctive, like nursing. Maybe it was, but when nursing went out the window, so did swallowing. If I pushed food down his throat, he’d choke. His brain just didn’t have a relationship with how to eat.
A speech and occupational therapist from the special needs and children’s services organization on Long Island started coming to the basement twice a week. I can’t remember her name, but I looked forward to her visits. It was the only chance I had to chat with someone close to my age, and I asked her all about her life. Nathaniel liked the therapy. She had different techniques to stimulate saliva production so he’d be motivated to swallow—she’d massage his cheek muscles or give him a pacifier with a hole in it, and she had a special spoon, like a big plastic Q-tip, that she
’d put peanut butter or Cool Whip on for him to eat, and to this day peanut butter is one of his favorite foods.
These little tastes that she fed him didn’t make a dent in his caloric needs for the day, so we were still dependent on giving him formula through the g-tube, which he was still throwing up so violently that he gave himself a stomach hernia. To help his reflux, Nathaniel had had a surgery called a fundoplication, where the doctor wraps the top of the stomach around the lower esophagus to make it harder for food to come up the wrong way. It helped for a while, but over time it had loosened. Now the doctors scheduled a second surgery to tighten it. They would also repair the hernia. Russel wanted to know when they were going to put the “fun” in “fundoplication.” Between jaw surgeries and something with his tongue and attempts to open his nose, we had lost count of how many surgeries he had at this point. It was around eight. They were handing them out to us like presents at Christmas.
This medicalized, failed baby-feeding was completely antithetical to the way I grew up. My family had an organic farm in Sanok, a village in the Carpathian Mountains near the Ukraine border. My five siblings and I ate whatever my mother gave us. There was no such thing as pickiness. We ate or we went hungry.
My father grew potatoes, tomatoes, corn, fruits, and other vegetables on his farm, but for some reason Russia, which had controlled Poland since World War II, also controlled the meat in our lives. There wasn’t a meat shortage—it was a question of ownership. If you wanted to keep your own pig, you had to hide it illegally. My mother kept a few chickens tucked away so we could have eggs. Everything at the supermarket except for bread, vodka, and cigarettes was rationed. That’s right—protein was restricted, but you could drink and smoke with wild abandon. I guess they figured the best way to govern was to keep everyone in a constant state of oblivion.
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