Normal

by Magdalena Newman

  Every week a family could get, say, two pounds of red meat, two pounds of kielbasa, two pounds of pork, and one pound of chicken. This meat did not sit in the butcher’s refrigerator, available for purchase. Instead, the store would receive a limited amount twice a week. If you got to the store at 5:00 a.m. to wait on line, you might get a better quality of kielbasa, or there would still be some chicken left. But if you didn’t get there until 8:00, you might wait in line for three hours only to score a very fatty piece of meat, barely good enough for broth, or you’d go home empty-handed. The same was true for sugar. And toilet paper.

  Sometimes, if a neighbor slaughtered a contraband pig, my father would secretly trade vegetables and potatoes for a chunk of it. They’d bring it over in the dark of night, after curfew, wearing dark clothes, and cut it up in the basement by flashlight. Ordinary people were driven to extremes to put a little meat on the table. But no matter how hard-won our food was, meals were always loud, full of chatter, laughter, and the clinking of cutlery, with me, my two siblings who were closest in age, and often cousins at the table. This is what family was to me, an imperceptible bond that was built and reinforced every day at that boisterous table. I wanted to replicate it in my new home.

  When Nathaniel was seven months old, my mother said, “Babies at this age should start eating solid foods like apples and bananas.” I had always believed in real, whole foods like the ones we grew on our farm. Formula supposedly contained all the nutrients he needed, but not if he kept throwing it all up—so I went rogue and tried sending some tasty real food up through the g-tube.

  First, I blended a little banana with water and put it into the tube, and, miraculously, he kept it down. The next day, in the grocery store, I noticed other mothers pondering the long shelves full of jars of organic baby food. It looked so much more appealing than chemical formula, so I picked one up. Why shouldn’t I try it? His stomach was like everyone else’s (except for the hernia). I put a few jars in my cart, and that night I emptied some sweet potato mush into the Vitamix, watered it down, and blended it until it was thin. Then I shoved it through the g-tube with syringes. Again, he kept it down. I couldn’t have been happier to know that I was finally nourishing my baby with good, healthy food.

  Growing up, my mother had fed us soup almost all winter using the fruits and vegetables she’d pickled and canned the rest of the year. One room in our basement had a damp, flat mud floor where she kept root vegetables in the winter—piles of potatoes, carrots, and parsley root. Another room had shelves and a high window where we stored jars of pickles, tomatoes, mushrooms, compote, jams, and jellies.

  I soon realized I could water down whatever I made for dinner in the blender for Nathaniel. His doctor agreed that I could try this. There was a bit of trial and error—a few times we had to make a quick run to the doctor because I’d clogged the g-tube. And I still needed to track his intake and feed him for hours a day because the watered-down food filled him up before he’d eaten enough calories. But for the first time in his life, he had actual food in his belly. He sensed the food as I loaded it in, and as the warm soup settled in his stomach, I pretended to myself that he could somewhat taste it. At the very least, he had to be burping up good flavors for the first time in his life.

  My mom says if you know how to make soup, you’ll always have a meal because soup can be made from whatever is around. The base is always the same: onions, garlic, chicken stock, and whatever vegetables you have. That is my mother’s homespun wisdom in a nutshell. There’s always a soup to be made is her way of telling me to make the best of every situation.

  Soon I was putting Nathaniel in his high chair to play with mashed bananas and potatoes and be part of the family during dinner. He still wasn’t really eating, but at least his high chair was finally as messy and used as any baby’s. I counted all the calories he took in through baby food and his g-tube and made sure he was getting enough protein, fruit, and vegetables. It was a lot of work, but I refused to believe he’d go through life with a tube in his stomach, and I did everything I could to help him reach that goal. My whole life was devoted to helping Nathaniel grow and develop.

  At last, he started gaining weight. He was still so thin, but he was thriving.

  The day came when he was scheduled to have the fundoplication. Nathaniel was eight months old and had been nibbling real food and receiving it through his g-tube for about six weeks. The hospital staff prepped Nathaniel, took his vitals, and set up an IV. He was in his little green gown and socks, and Russel was in his scrubs.

  As we walked toward the operating room, the doctor turned to me and asked, “What’s new?” Dr. Ginsburg, who had put in Nathaniel’s g-tube, was the chief of pediatric surgery at NYU. He was a tall, handsome guy who carried himself with great confidence and had a reputation for odd bedside manners. The nurses told us he never opened up to patients, but we found him to be very friendly. When our paths crossed in the hospital, he always stopped to ask how we were doing.

  Now I told the doctor that Nathaniel had started eating real food and was keeping it down.

  “That’s good news! When did he last throw up?” he asked.

  “About a month ago,” I replied.

  We were in the middle of the hallway leading to the OR. Dr. Ginsburg stopped in his tracks. There was nearly a comical pileup as the rest of us halted behind him. He said, “He’s keeping everything down! What are you doing here? Go home!” He instructed the nurses to remove the IV and told us to dress Nathaniel and take him home. “I’m not going to mess with him,” he said. “The hernia will most likely heal itself.” And it did. This was a huge payoff for finally finding the confidence to follow my instincts. I had been on completely foreign ground, but I was starting to find my footing.

  From the moment he got the trach, Nathaniel could only make raspy, croaky noises. He couldn’t scream. Most new moms want nothing more than for their babies to stop crying. But when his little face turned red, I yearned to hear my baby express his hunger or distress.

  Around the same time as the canceled fundoplication, we found out that Nathaniel was ready for a Passy Muir. This was something we had been waiting for. The Passy Muir is a one-way valve that goes on the trach and is designed to help people speak. It let Nathaniel breathe in air, but it didn’t let the air back out, forcing him to open his mouth to exhale. That meant air would get to his vocal cords, allowing him to talk.

  Dr. Bernstein, the ENT surgeon, said that his lung capacity had grown and he was physically bigger. It was time to give the Passy Muir a try. As they attached it to his trach, the doctors warned us that eight-month-old Nathaniel might freak out when he heard his own sounds for the first time. We stood waiting, pump at the ready in case he choked. But as soon as they put it in, a small, raspy sound came through his throat. He was comically surprised, looking left and right as if to say, “Who was that?” Then he started babbling and smiling.

  I said, “You have such a cute voice!”

  And from then on he never shut up.

  Talking, tasting—Nathaniel grabbed on to each new sense that came his way and never let go. As his first autumn passed, he started wanting food. He’d sit in his high chair and wave his arms, bouncing and babbling in hope of applesauce or bananas. For a long time, every time I fed him through his g-tube or his mouth I was nervous that he would throw up. I was so used to that. The minute I ditched the formula though, he never threw up again and we had one less specialist on our regular appointment list.

  I wanted all of the medical elements of our situation to be temporary. Normal is a door to a lot of different rooms, and normal was my goal. I wanted Nathaniel to be able to do all the things that most babies and kids did. I knew he might need a g-tube for future surgeries and another family like ours might keep it and continue feeding him that way in anticipation of that, but I wanted him to learn to eat by mouth because it brought him, and our family, one step closer to a regular life.

  Nathaniel’s ability to eat solids did
n’t happen overnight; it took a few good months of feeding him one spoonful at a time. His windpipe and his throat were so close together that he often choked. If food went down into the trach, I had to suction it. If he swallowed wrong, food came out through the stoma. The trach pump had to be within reach at all times. I had to be within reach at all times. Walking on a balance beam is easy and safe when you’re two inches off the ground, but terrifying and dangerous when you’re fifty feet in the air. Feeding a baby with a trach was like walking the high beam. The pump and I were the safety net.

  My child’s ability to breathe was always at risk. Every day had life-threatening possibilities, and every day my chest hurt—a weird, pinching pain that was now a constant. My brain had been rewired to be on alert all the time, and the clutch of worry was unrelenting.

  9. To Hear

  The first thing I had noticed when Nathaniel was born was that he was missing ears. Growing up, my hearing was everything to me.

  Right next to my parents’ farm was a house that has since been torn down. It was an old-fashioned little wooden house, painted black. My great-aunt Helena—my father’s aunt—lived there. She lived alone, with a grand piano and a small, fluffy white dog, a Maltese. I was too young to get the story straight, but I had some idea that when she was young, during the war, she’d escaped from a convent and hidden from enemy soldiers. Her house seemed extravagant to me, full of velvets, with beautiful, draped curtains. Every sofa was covered with huge elaborately dressed dolls that we weren’t allowed to touch. My aunt sewed fancy dresses for everyone in town, and she herself dressed like a silent movie star, in stylish hats and fancy shoes.

  When I was three or four years old, my twin cousins, who were about my age, lived on the second floor of our house, which was built to be a duplex. My great-aunt, who had gone to conservatory in Ukraine, started teaching the three of us piano. She would show us something, then we would take turns trying it out.

  Around that time, my mother and aunt signed me and my cousins up for a preschool that specialized in music. We played instruments, sang, and learned kid-level music theory. After a year, my cousins decided they didn’t want to do it anymore, but I loved it. I entered my first piano competition when I was almost five. We took a train to a nearby town—my first train ride—and when I signed in, I could barely write my first name. But I won a prize in my age group, and from then on, my life was filled with traveling from one competition to another.

  A few years later, Aunt Helena was dying. She had cancer, but because that word was taboo my parents said she had trouble with her stomach. My mother told me that she was asking for me to play “Lullaby for Bear,” a very simple song she’d taught me. The piano was in the corner of her bedroom. I was only five or six—I didn’t understand death—but I played, and every time I finished, she said, “Magda, play it again.”

  The mentality people in my community had at the time was that every child was expected to specialize in something—maybe it was a Russian thing. One of my sisters played cello. She was very talented, but a bit lazy. One of my brothers was a genius in biology, winning science competitions all over the country. Once piano was determined to be my talent, I spent the rest of my childhood focused on it. I went to school in the morning, then home for lunch, then to music school all afternoon. There was no school bus and my mother was too busy to drive me, so I walked almost four miles a day, rain, snow, or shine. Sometimes I would catch the town bus, but waiting for it might take twenty minutes. It was never worth it, so in addition to my full school schedule, I spent about two hours a day commuting by foot. If I had a math test, I would wake up at 3:00 a.m. to study for it.

  When a competition was coming up, the music school would write a letter excusing me from regular school. Then sometimes they’d lock us in a practice room for eight hours a day. Some kids would jump out of the second-floor window onto the grassy yard and sneak into town. I’d look out and see my friends waving. “Come on Magda, let’s go!” It was tempting, but I never joined them. I was afraid of heights.

  It’s ironic that Nathaniel’s ears were the first problem I noticed, and I can’t even claim that it was the fear that he would live in a world without music. Truthfully, all I cared about in those first moments of ignorance and shock was his appearance—and that’s what many people still think is most important when they see him. However, by the time he was a week old, I understood that his looks, his missing ears, his hearing—these were at the bottom of the list of my worries.

  When he was only a few months old, Dr. Bernstein pushed us to get him a hearing aid. Though he had no outer ears to channel noise, just a tiny flap of skin, his inner ear was fine. He was a great candidate for a bone-anchored hearing aid (a BAHA), which carries sound vibrations directly through your bone to your inner ear. At first, it would be held on his head by a tight rubber band. Later, it would be mounted into his skull.

  There were good reasons to wait until he was older to introduce this hearing aid. A big one was cost. Insurance puts hearing aids in the category of “durable medical equipment,” which meant they were only reimbursable up to $500. At the time, the BAHA cost $5,000. Yeah, not great. (The price of the most expensive BAHAs has gone up to $7,000, but now some insurance companies cover 80 percent of the cost.) We learned that the longer a child goes without being able to hear well, the more difficulty he has learning to speak. The earlier we gave him sound, the better shot he had at talking normally.

  We followed Dr. Bernstein’s advice and scheduled Nathaniel to get his BAHA when he was still only a few months old. Russel and I met the hearing specialist in the audiology room at NYU. The doctor told us, “Some babies get upset because they’re not used to such loud noises around them. We’ll try it for two minutes, and if he cries we’ll take it off.”

  The doctor handed me the hearing aid and showed me how to turn it on. When I first put it on him, Nathaniel started fussing, as if to say, “What are you doing to my head?” The headband that held it in place had to be really tight.

  Then I turned it on. We didn’t know what to expect, but as soon as we spoke quietly to him, Nathaniel’s face lit up. His eyes got big. He smiled and looked around with happy curiosity.

  He started babbling and looked startled at the sound of his own voice. His face brightened, and he babbled more. Everything about his expression said, “This is a miracle.” Russel started crying, as he is wont to do.

  Then, because the doctor didn’t want to overstimulate him, I took the hearing aid off. The corners of Nathaniel’s mouth immediately turned down. He reached toward me. He wanted it back!

  I suddenly felt grateful. To hear was a gift, like every sense, one of the miracles of life that most of us experience every day. Seeing the joy on my son’s face made me realize how much I took my own hearing for granted.

  From that moment on Nathaniel did not want to take his BAHA off. Ever. If we tried, he’d start crying. He eventually got used to the idea that it had to come off for sleeping and bathing, but as soon as he woke up or finished a bath, he’d look around for it and make it clear that he wanted it back. Now I had to add a backup battery to the list of supplies I carried at all times. When the battery died, he’d cry and point to his hearing aid. Heaven help us if we were on a long car trip when it died. If I didn’t have a battery on hand, we were in for a long, loud tantrum while we detoured to find the closest drugstore.

  Later, when Nathaniel was around two and a half and potty training, his hearing aid accidentally fell in the toilet. That’s right, the $5,000 hearing aid that was so sensitive to moisture that he couldn’t even wear it out in the rain. The stretchy headband that held it on tended to loosen over time and occasionally needed to be replaced, and it must have been pretty stretched out to fall off at this inopportune moment. Nathaniel was horrified—he knew what a disaster this was. He immediately started wailing, “I want my hearing aid!”

  Thankfully I was there with him in the bathroom. In one of my least favorite—but still heroic�
��moments, I reached into the toilet full of pee and grabbed the hearing aid. I quickly swiped it with a disinfectant wipe and dropped it into the dehumidifying container where it ordinarily lived at night. Three hours later, it was miraculously restored.

  We called the BAHA his “magic ear.” With it, a new world of sound opened to him. He could hear dogs barking. Birds singing. Kids playing. Cars driving by. He reacted to everything. Before, when he watched TV, he had sat silently. It hadn’t occurred to me that he might do anything different. But now, when he watched Baby Einstein or heard me play the piano or listened to the Wiggles, he danced and sang. And when he was still being fed for hours through the g-tube, I could put on a video and know that he wasn’t bored out of his mind. He became a much happier child.

  When you’re taking care of a baby twenty-four hours a day, every new thing they do is miraculous. That’s why every mom thinks her child is a genius—because she watched the baby go from doing nothing but eat and sleep to smiling, clapping, and learning to speak a whole language pretty fluently in just a few years. My baby’s milestones were skewed, but I know that when Nathaniel got his hearing aid, his personality came alive. I lived for his expressions and joy.

  10. Division of Labor

  My whole life was devoted to Nathaniel, and it was a problem. Fall passed, winter came again, and in February Nathaniel would turn one. With all of his equipment, it was hard to leave the house. I had hoped that as time passed and I learned how to take care of him, things would get easier, but some of my darkest hours, literally and figuratively, were the winter I spent in that Long Island basement. Hal was kind to renovate for us, but the one thing he couldn’t fix was the small, high basement windows. Every morning Hal, Nancy, and Russel would head off to work. I’d watch them go then retreat to the basement. There was no natural light. My life revolved around feeding Nathaniel constantly. He was a delightful, mellow baby and my best buddy. I’d read him books and tell him stories, or he’d play with his trains. But he spent hours hooked up to his feeding bags, and I was hooked to him. We were trapped and isolated.