Normal

by Magdalena Newman

  Things would brighten when Jenna and Emily came to visit. Even though it was cold, we would bundle up the babies, put them on the swing set, and talk about Emily’s experience in preschool. It was going well, and it gave me hope for Nathaniel.

  It is horrible to say and disturbing to me that it’s true, but I almost fainted when I saw Emily for the first time. She didn’t have a trach, but her features were so small, fragile, and close together that it was shocking. How silly and embarrassing this is, but I admit it because it’s important for all of us to acknowledge that, no matter how rationally inclusive and just we are, we’re still subject to physiological reactions that we can’t control. Even now, after all I have experienced, I might still have that reaction. It says nothing about Emily and everything about me. That should make anyone feel better about how they might react: If I can have this reaction, anyone can. The best I can do is try to handle myself with grace.

  In Hoboken I had rented a piano and had a few students. We brought the piano to the basement, and I was now teaching Hal and Nancy’s twelve-year-old daughter, Chelsey, and one other student. I had played for Nathaniel from the beginning, mostly to keep myself sane. He’d sit on my lap and I knew he could hear a little of it and that he definitely felt the vibrations. Now that he could hear clearly, I selected my music more deliberately: Bach, because it is very mathematically constructed. Debussy, which is more like impressionist painting. I picked a few pieces to play over and over so he would learn to recognize them. Nathaniel loved Debussy’s “Arabesque.” He had connected to me through music even before he had his hearing aid, but it made all the difference to see his face respond. Russel still talks about how it lifted all of our spirits.

  I loved playing the piano, especially for Nathaniel, but as my only escape, it wasn’t enough. The more adept I got at managing Nathaniel’s various tubes and gizmos, the less possible it seemed that there was anyone else who could stay with him to give me a break. There was Russel and his mother, Barbara, who now knew how to suction Nathaniel too. But otherwise I just wasn’t comfortable leaving him for any period of time. Ever since the nurse had displaced his stent, I had a hard time trusting my son’s care to anyone else.

  Anxiety over Nathaniel’s special needs wasn’t the only reason I was so dedicated to him. It’s how I was raised. In America, parenting culture tends to revolve around the idea that everyone has their own path. Children live with their parents, who love and care for them while looking for ways to nurture their own interests and/or careers. Reasonable enough, but in our little Polish village, my mother—and even my father—made providing for us their life’s purpose. As hard as my mother worked in the garden and on the farm, she came home in the middle of each day to cook us lunch. After school, both parents would sit with us around the kitchen table, and my mother would sip coffee and ask, “How was your day? Do you have homework?”

  Dad would say, “I’m going fishing this afternoon; does anybody have time to join me?” Some of us would go, some wouldn’t.

  Before I became a parent, I had career opportunities. I could have been a music professor, but I don’t say that wistfully. Now my priority was to care for Nathaniel and to do everything I could to give him a happy childhood. I deliberately dropped having a life of my own outside of being his mother. I struggled, but I chose to struggle—so it was all me, always, twenty-four hours a day. We were tied to each other. Most of my day was dedicated to Nathaniel, then I’d prepare dinner for the household.

  I’d grown up cooking with my mother and had always loved it. Polish food is designed to take as long as possible to prepare. You have to fry or bake each ingredient separately, then combine them and cook them again. Many recipes require homemade dough, which makes the whole ordeal take forever. Pierogis, stuffed cabbage, and pickles are all delicious, but they take hours to make. In Poland, many women stay home to feed their families, and traditional Polish food does its best to keep it that way. Or maybe the women invented complex recipes to make staying home more interesting. It’s a chicken/egg situation, or in Poland it would be a pierogi/golabki situation. Nowadays women are coming out of their kitchens and ditching some of these recipes. I don’t cook many Polish meals now because they’re not very nutritious, and I learned long ago that there are better ways to spend my time. Given the choice, I’d rather take a nap!

  But when I was living in the basement, even preparing the foods I loved was unrewarding. I took responsibility for dinner because I wanted to show my gratitude to Hal and Nancy. It was no surprise that everyone was tired when they came home from work, especially Russel after his epic commute. The problem was that I was eager—okay desperate—to talk to adults. But they had been dealing with adults all day long and were spent by the time we sat down. They would quietly eat what I cooked, then move to the couch to watch TV for the rest of the evening. I felt like I was there to serve everyone else.

  That feeling wasn’t confined to mealtime. I had no time, no money, no friends, no freedom, no life, nothing. It was like I didn’t exist. Alone with the baby in my brother-in-law’s basement, I felt like I was losing my mind. My body was worn down from lack of sleep and stress from constantly monitoring Nathaniel to make sure he didn’t pull out his trach or g-tube. Then, when he was sleeping, I held his hand so I could tell if he moved. If he started fussing, I checked to see if the trach was in. Crawling around after him, watching him like a hawk, I could never relax.

  I was miserable. I was jealous of my sister-in-law’s career and seemingly normal, balanced life. Every day Nancy dressed nicely, put Chelsey on the bus, and went to work. Sometimes she had dinner with friends or went shopping for clothes. I couldn’t remember the last time I put on something nice to wear, and it felt like my brain was deteriorating.

  The only time Nathaniel and I left the basement was to go to the grocery store. I still hadn’t managed to get a driver’s license. My hometown, as with most of Poland, was designed to be navigated by public transportation, by bicycle, or on foot. It couldn’t have been more different from Long Island, where you needed a car to go almost everywhere.

  The closest supermarket was two miles away, just about the distance I had walked to school growing up. I would put Nathaniel in a stroller, bundle us both up, pack the trach pump, and walk to the supermarket no matter the weather, staying on the sidewalk when there was one and moving to the street when there wasn’t. Eventually I found a shortcut through a neighbor’s field. I remember pushing Nathaniel across the field during winter and looking back to see the stroller tracks cutting through the snow, like a strange animal had come out of hibernation and gone looking for food. After shopping, I’d bring the groceries home stuffed in the storage basket underneath the stroller.

  I cried every single day, pitying myself, and aching for Nathaniel. I still couldn’t accept the fact that this was real, and I still had dreams that it was just that—a dream. I was forgetting to eat and dropped too much weight. When we drove into Manhattan I had a vision of opening the passenger door, jumping out of the car, and being hit by another car. I was scaring myself.

  Russel was worried about me. My English still wasn’t great, so he found me a Polish psychiatrist who listened to me describe what was going on, and confirmed that I was clinically depressed. He put me on 50 milligrams of Zoloft, a hefty dose.

  I stopped crying, but I also became like wood. When I watched TV, I didn’t react. It felt as if there was a pane of glass between me and the rest of the world. The medication took me from one extreme to another—from being too emotional to not feeling anything at all.

  I’d been on Zoloft for four months or so when I thought of a moment from my childhood that told me exactly what I needed. My uncle Eligiusz, who was a ranger in our area, had a big forest behind his house. Every Sunday after church we’d go there for a big family lunch, then my brother, sister, cousins, and I would play together for hours. We’d make houses in the woods out of sheets and sticks, climb trees, and make mud soup with flower petal spices.
Every once in a while in the evening, my uncle would make a fire in the backyard and roast kielbasa.

  At one of those nighttime gatherings, Uncle Eligiusz said, “I have something to show you guys.” He led a parade of kids by flashlight into the woods. Coming to an open grassy area, he pulled aside a clump of leaves to reveal a mother hedgehog, with a bunch of pink-skinned newborn babies. I was in awe, realizing how often we ran among the trees, unaware of what creatures were right under foot.

  My uncle said, “You have to keep your eyes open. There are secret worlds all around us.”

  A few things hit me about that story. First, I wanted a childhood like that for Nathaniel, one where he could run freely in the woods, making his own fun from scratch. That was something I’d always wanted for my children. What I realized was that I was like that mother hedgehog. I’d been hiding with my son underground, taking shelter in a safe bubble, protecting him when he was most vulnerable. Nobody would get to us. No illness, no accidents. And nobody knew we were there.

  Second, I thought about the people in the outside world, how they might pass our hiding place day after day without ever knowing we were there. In our safety was isolation, and the same is true for every family in every house that any of us pass, the secrets and suffering and nurturing kept underground. We don’t know each other. If we want to share our vastly different worlds, if we want to connect, we have to come out sometime.

  It was time for Nathaniel and me to emerge from that protected darkness into the sunny real world.

  I was ready.

  The first Christmas after Russel and I met, he made his second trip to Poland since our summer in the Hamptons had ended. This time he bought a one-way ticket with plans to stay for around six weeks.

  I told Russel all about our beautiful farm before he came to visit, but to his mind the reality didn’t live up to my romantic memories. Outside, he expected to see shiny glass greenhouses harboring the fresh vegetables I’d described, but ours were in disrepair, with broken glass, grayed-out windows, rusted metal columns, and vines weaving in and out of the windows. I shrugged off his surprise. I’d never known anything else.

  The first thing he noticed when he walked into the house was that everyone in my family was wearing pajamas, robes, and down parkas inside the house. To this day, there’s no modern heat, just a coal furnace and a wood stove, and when it gets really cold, my father adjusts the heat vents to direct them toward the greenhouse so the tomatoes don’t freeze. The colder it is outside, the colder it is inside. My wimpy American boyfriend was perpetually shivering, even with his coat on.

  That evening, Russel was so cold he couldn’t sleep. Although I enjoyed watching the city boy suffer a little, I’m not heartless, so I dug up an old space heater. Halfway through the night, I woke up to the smell of an electrical fire. The heater had shorted. Russel thought the house was seconds from burning down.

  The second night, he shook me out of a deep sleep. “Wake up! What’s that noise?” He thought there was an animal trying to claw its way through the wall.

  “Go back to sleep,” I told him. “That’s just my father refilling the furnace.”

  Three weeks earlier he had been serving cocktails to Mariah Carey and her entourage in the Hamptons. Now he was listening to the unfamiliar sound of someone shoveling coal into a furnace in Sanok, Poland. He told me he loved it. And me.

  At some point on that trip, we were driving with my father in his tiny, rickety red car, with five-speed manual transmission, ripped seats, windows you could barely crank, and no heat. Most likely we were going fishing.

  Russel turned to me and, speaking in English, which he knew my father wouldn’t understand, said, “Hey, if we’re going to get married, I should probably ask your dad first.”

  I turned to my father and translated, “Russel thinks he needs to ask you if he can marry me.”

  My father shrugged, as if to say, “Sure, why not?”

  Russel said, “What did you just do? Tell me you didn’t ask your father just now.” That was exactly what I had done. He asked, “So, are we getting married?”

  I replied, “Yeah!”

  There was no formal proposal. No getting down on one knee. That night we went to midnight mass. As was traditional, we each had a shot of vodka before braving the cold drive to a tiny church one town away. It was dark and quiet outside. The building was barn-like and covered with a fresh foot of snow. Inside, it was brightly lit, there was a fire, and it was full of people. The scene was magical, even for someone who’s not religious. The service was all in Polish, but Russel was mesmerized. And cold. As far as I could tell, he was cold every minute he spent in Poland. As we left the church, Russel said, “I really do want to marry you.”

  I said, “Yes, I really want to marry you too.”

  The week between Christmas and New Year’s, I introduced him to all of my family. There are thirty cousins, six uncles, and seven aunts, all of whom wanted Russel to share the vodka that they’d made in their basements. He wanted to be polite, and that meant he was drunk the entire time.

  On New Year’s Day I woke up early and went down to the kitchen. There was a breakfast nook with an old wooden table, a stove with wood stacked next to it, a teapot on the stove, and coffee brewing. The table was spread with a typical continental breakfast: cheese, meats, bread. A little while later Russel, hungover again, came down to eat.

  My English still wasn’t great, but I knew how to tell him this: “You know I’m not marrying a bartender, right?”

  Russel was taken aback. “What? You said yes! We’re getting married.”

  I said, “Yes, we’re getting married. When you get a better job. Here’s the deal: I get my masters on June 28. Two weeks before that day, if you’ve found another job, I will give up my life here, get on a plane, come to the US, and marry you. If you don’t have a job, I’m not coming.”

  Russel took my ultimatum seriously, but he flew back to post-9/11 New York and couldn’t even get an interview. In desperation, he called an old college buddy who was working in insurance and said, “Hey Bill, I’m desperate. I need a job. Can we at least have lunch?”

  They met for a drink and Russel said, “I’ve got this gorgeous concert pianist from Eastern Europe who’s willing to marry me.” Apparently, he pulled out my photo to show him. He went on. “The only problem is if I don’t have a job she won’t.”

  Bill replied, “I’m getting you a job at Chubb.”

  He was true to his word, and Russel got a job as an operations manager with one month to spare. As promised, I booked my flight.

  We were both holding up our ends of the bargain, but I had spent over a year in that basement, a pump on one arm and a feeding bag on the other. I was skinny, fragile, and hunched over as I maneuvered Nathaniel from one doctor’s appointment to another. When I told Russel I needed to get out, he didn’t question me.

  We saved every paycheck, survived on Hal and Nancy’s generosity, managed to pay off some of the medical bills, and our credit score clawed its way back up. Finally, after eight months in the basement, Russel told me we had enough money saved to buy a house in Charlotte. His company was willing to relocate him to North Carolina, with a promotion no less, and his parents were building a house in the area. This was a light at the end of the tunnel.

  part two

  a normal childhood

  11. a house of our own

  It was spring and Nathaniel was a little over a year old when we moved to North Carolina. Packing for Hal’s basement, we had fit everything we owned in a pickup truck: a mattress, a box spring, and a couple of dressers from Russel’s bachelorhood. But in the past year we’d acquired a crib, some toys, and an impressive cache of medical equipment and supplies, so this time we hired a small moving truck that, though it had a head start on us, would arrive a couple days after we did.

  The highway from Long Island to Charlotte threaded through rural Pennsylvania. Russel drove—I had failed my driver’s test some embarrassing num
ber of times because I could not parallel park for the life of me—and I was happy to be the passenger, watching the blurred world speed past. We were above ground. We were free.

  All of Charlotte was in bloom. Our house was in a new, cookie-cutter development, the kind where all the houses look the same and there’s a single, sad tree that looks like it’s ten years away from providing shade quivering weakly in every front yard. The previous owners had forgotten to take some garlic out of the fridge, but aside from the terrible smell, the place was in good shape. I gave the entire house a scrub-down with white vinegar, my mother’s favorite natural disinfectant. The sun blazed through the windows, and I could feel it working magic on me. I had never been so grateful for windows.

  We would drive back to New York for Nathaniel’s appointments every couple of months—we couldn’t afford to fly—but Nathaniel would have a break after one more big surgery, so we would be able to settle into a routine. The feeling of barely surviving gradually faded. A family doctor helped me wean myself off Zoloft, and I started trying to give my now-walking boy not just food and air but a real childhood.

  Growing up on a farm defined my childhood. We had a huge yard with three glass greenhouses and three foil greenhouses. Inside were tomatoes, cucumbers, and lettuce. Outside were plots of carrots, potatoes, parsley, Brussels sprouts, berries, and a grove of walnut trees. In the spring and summer, we grew roses and white, purple, and light pink mums that my father sold to local florists. People put the mums on the graves of those they loved for All Saints’ Day. The farm was full of color, smells, and creatures: an enchanted paradise.

  Given the wonders right outside our back door, I didn’t have or want many toys: there was a cloth doll that someone had made for me, and my brother had a few toy cars. Maybe there were some blocks. One summer my father went to America to try to earn money to replace our beat-up car, which we needed to bring the fruits and vegetables to the market. On a three-month travel visa, he ended up working as a gardener for some wealthy people in the Hamptons for a year.