Normal

by Magdalena Newman

  Okay, so she was diabetic. But she was ninety-eight years old! On my next visit, I brought her five doughnuts. She said, “I’m going to eat them after lights-out,” and hid them under her pillow.

  Once the residents learned that I would take any request, I was regularly sneaking in doughnuts and other forbidden treats. I had something in common with them: I knew how it felt to wait to die. A couple of ladies took me to their rooms and told me about their families and their lives. It seemed to me that the greatest loneliness of aging was feeling like you didn’t have a voice. These women had stories to tell, and I listened. I didn’t talk about myself; they weren’t interested in me. They wanted to be heard.

  Now that both kids were in school, I also had some time to think about myself. For the first time I had a social life—my friends who lived nearby would come over to watch Mad Men or Nurse Jackie after they put their kids to bed. Sometimes I’d meet up with my friend Kate, the wife of our former pediatrician from Charlotte. Coincidentally, they had moved to West Hartford right before we did, so I had a built-in friend. Kate was smart and sarcastic, the kind of irreverent mom who didn’t make a big deal out of giving her kids a coffee or a Coke if they asked. “You want to try it? Have it,” she’d say.

  We saw other mothers giving her dirty looks, but Kate didn’t care. Once, when she had a bad day, she showed up at our house in the middle of the day with a bottle of wine and announced, “I can’t take it anymore. This is for us bitches.”

  When I was sick, I’d lost seventy pounds, most of which needed to go, but I had no muscle, just lots of extra, sagging skin. Besides walking everywhere in my hometown in Poland, I had never exercised in my life. I wasn’t allowed to. After playing piano through high school, I entered the music conservatory, where I practiced eight to ten hours a day. The teachers at the school were responsible for producing musicians who could compete at the highest level, so they made sure I didn’t play sports and risk injuring my fingers.

  Now Kate dragged me to the gym at the local JCC. The first time I went to an exercise class, I was very self-conscious. Everyone around me was in shape and knew exactly what they were doing. But I started with the smallest weights and dutifully went three times a week. A couple months later I noticed muscles I’d never seen before and gained some confidence. In the gym’s mirrors, I saw that the other women looked like a million bucks in their matching workout clothes while I wore Russel’s old, stretched-out T-shirts. I’d started gaining muscle and looked healthy, and I wanted to show it, to feel good about myself when I left the house. I hadn’t thought about such things for what felt like a lifetime. It was, in fact, Nathaniel’s lifetime.

  I went to the same class three times a week at the JCC, religiously. It was called Group Power. The instructor was on stage with a microphone. She looked so strong. I had mental strength, and now I wanted physical strength to match it. The stronger I got, the better I felt.

  I became addicted to my workout, and when I get excited about something, I like to set a high, almost impossible goal. Two years after my very first class, I decided I wanted to teach the Group Power class. It was a specific program run by a company called Mossa. I flew to their headquarters in Atlanta for a weekend and went through the instructor training. After submitting videos of myself leading the class, I passed the assessment. This was a huge milestone in my life. I had been sick and weak, and now I was healthy and strong—I felt like I could move a mountain, and I’d found a new way of making myself feel better. To pass the assessment, I’d also had to prove I could memorize the hour-long routine and speak clear enough English that the class could follow my direction. I was proud of myself.

  I wasn’t the only one who was rebounding from those hard years. Russel remembers seeing a photo of himself from right after we moved to Connecticut. He was sitting on the couch with a slice of pizza in his hand and a beer resting on his big belly. He tells me that when I saw that picture, I said, “You’re disgusting.”

  A few nights later a set of mail-order DVDs arrived at the house. Russel had seen a commercial for an exercise regime called P90X. It promised him that he could be buff if he just followed the program. He quit smoking and drinking, built a little gym in our basement, and went for it. Six days a week, an hour and a half a day. In forty-five days he lost twenty-something pounds, and he kept going, continuing to work out and changing the way he ate. When he traveled for work, he brought exercise bands and went to the hotel gym. Now Russel goes through phases of getting into great shape then taking a break and complaining about his health, but when we both got in shape in Connecticut, it was a milestone. It felt good to both of us to be so fit and healthy after my life had been on the line.

  Russel’s office was only a few miles from our house. Every morning before school, I’d put Jacob in the stroller and Nathaniel would grab his scooter to walk Russel to the bus. Then, at the end of the day, he’d call and say “I’m leaving the office now. I’m on the 5:48 bus. I’ll be at Farmington Avenue at 6:02.”

  As his bus pulled up, I’d see Russel looking out the window, eager to see us. When friends asked him to play golf or go out after work, he mostly turned them down. He was just loving being a father and being with his family. He told me he felt like he was becoming more of the man he had always wanted to be, a better version of himself.

  At home, in the evenings, I was back to reading novels like I had my entire life except for the previous six years. Sometimes, after the kids were asleep, I would leave Russel with them while I wandered around Marshalls, for the first time in a long time having the leisure to shop for shoes. (In Poland, when I was little, we only ever had one pair of shoes at a time, and we wore them until they had holes in the soles. Here, there are so many shoes to choose from. I still can’t get over it.) Being away from my kids every now and then helped me be a better mom, and I was finally clear-headed enough to seek out what I needed: exercise, friends, the chance to give back, and a little retail therapy.

  All the not-normal of our lives was starting to look pretty normal. A kid with physical challenges, different on the outside but in school, learning to read, and playing with the neighborhood kids. A mother with cancer, in remission, finding new interests.

  In certain ways we’d been dealt a bad hand, but it didn’t break us. It didn’t break my faith in God. It made us stronger. Nathaniel fought to breathe, to eat, to see, and to hear, though he might never be able to smell. I found new appreciation for how remarkable these bodily functions are, and how effortlessly most of us live.

  Nathaniel experienced his senses differently: He never had the experience of losing functionality. He didn’t go from breathing easily to needing a trach; he didn’t lose his hearing. Instead, he was on a path from restriction to freedom, in many ways the same as growing up is for most kids. A baby goes from milk to baby food to solids. Nathaniel went from being fed by tube to eating real food. Every child has to learn to watch out for hot stovetops, stay out of the street, and hold their breath under water. Nathaniel had a few more items on that checklist, but the process, the growing cognizance and self-care, was a familiar trajectory. That’s how I saw it and how I presented it to him. Nathaniel wasn’t a victim; none of us were. That wasn’t part of his or our family’s identity.

  17. Shallow Water

  I could have stayed in that life indefinitely, but after three years in Connecticut Russel took another job back in North Carolina. It was a move that made sense; the position was a step up the corporate ladder. Jacob was now six—he’d started kindergarten—and Nathaniel was eight. The schools in Charlotte were good, Russel’s parents were still there, and it was more affordable.

  On Nathaniel’s last day of school in Connecticut, his classmates, teachers, and nurses presented him with a memory album filled with notes and pictures. His nurse, Lisa, and Dr. DePalma all had tears in their eyes.

  We moved back to the same cookie-cutter neighborhood we’d lived in before, but a different section. We bought a house that was a simil
ar model to the one we’d sold, but this one cost less because the real estate market had gone down. Most of our medical bills were paid off for the time being, and Russel was making more money, so our finances were no longer an everyday worry.

  Summers in Charlotte were steamy, and families gravitated to the community pool. It was the kind of place a kid could happily spend all day every day: There was an Olympic-sized pool, a kiddie pool for toddlers with mushroom-like water features, and a huge waterslide surrounded by a lazy river. On Fridays the pool was open until 10:30 at night, and families would order pizza and eat poolside.

  Most of the kids around Nathaniel’s age were good enough swimmers to play in the main pool, and they’d go down the waterslide over and over again. Nathaniel was dying to go down the waterslide like the others, but it wasn’t safe for him. If water got into his trach, it would go straight to his lungs, and he could end up with pneumonia, which happened all the time during cold and flu season. The first weekend the pool was open for the summer, Russel stood at the bottom of the slide, catching him before he went underwater. But then Russel went back to work and that Monday, I tried to take over. I waited at the end of the slide, with water up to my chest, for my fifty-five-pound son to barrel into me. He came down with a crash—I had caught him!—and when I stood up the top of my bikini was completely off and slowly sinking. Holding him above the water by his armpits, I somehow maneuvered and managed to rescue my top. Then, using Nathaniel as a cover-up, I carried him to the side of the pool and quickly put my top back on.

  When I looked back up, I noticed the teenage lifeguard looking at me. “I’m sorry there’s not much to see,” I said.

  He blushed.

  That was the first and last time I did the waterslide with Nathaniel. After observing my exchange with the lifeguard, Nathaniel said, “I’ll never ask you to catch me again. If Daddy’s not around, I’m not doing it.”

  He was mostly a trouper about the stuff he couldn’t do. He’d just say, “I don’t want to go to the pool,” but we knew it bothered him. How could it not?

  For Jacob’s sixth birthday, he really, really wanted to rent a bouncy house with a waterslide. Maybe he wanted it because he loved waterslides, or maybe a tiny part of him suspected his big brother wouldn’t be able to participate and the attention could finally be on him. We were acutely aware of how Nathaniel’s needs affected Jacob’s childhood on a daily basis. If ever a sibling could say that his childhood was “unfair,” it was Jacob. His whole schedule revolved around Nathaniel’s medical needs. Back when Nathaniel still had a g-tube and we’d be stuck in the house feeding him, my mother-in-law gave Jacob little pots and pans, measuring cups, and other brightly colored cooking tools. He had a special drawer labeled “Jacob’s cooking drawer.” He was enthusiastic about this activity, but it wasn’t necessarily his first choice. Thankfully, whether by good fortune or in reaction to his situation, he was a people pleaser.

  For this birthday party, we decided we wouldn’t deprive Jacob of a waterslide if it was what he really wanted, so we rented an inflatable one for the front yard. It hooked up to a garden hose at the top, and water flowed continuously down the side.

  Just before all the kids were supposed to arrive, Nathaniel begged to take a turn on the slide. The pool at the bottom was very shallow so he wouldn’t even need someone to catch him. He tightened the cap on his trach and had a go. But the minute he plunged to the bottom, his trach filled with water and Russel had to suction him. The cap was attached by a Velcro tie and it just wasn’t a perfect seal. We told him that it was too dangerous and, unfortunately, he couldn’t go down the waterslide again.

  This time Nathaniel got upset. He’d been anticipating the fun of the slide, and we’d all thought he’d probably be able to do it. After all, it was smaller than the slide at the pool—just an inflatable toy—and he’d always had inflatables for his birthday. We didn’t realize that this one would be so different. Now Jacob was having a fun party and he wouldn’t get to be part of it.

  Nathaniel screamed, “It’s not fair; take that slide back! I don’t want it in my yard!”

  Then Jacob got upset. Because his birthday was in the middle of the summer and that was when we scheduled Nathaniel’s surgeries, Jacob rarely got to have a real party. It was supposed to be Jacob’s day.

  Russel turned to me and said, “Get Nathaniel out of here. Whatever it takes. Let his brother enjoy himself.”

  I took Nathaniel to a go-cart track for the rest of the party, promising him and Jacob that we’d come back in time for the cake. When Nathaniel and I left, Russel went inside the house to hide that he was crying because he hated the fact that we couldn’t enjoy birthdays together like a “normal” family.

  While Nathaniel accepted his limitations most of the time, there were other occasions, like the waterslide, when he wasn’t happy that other kids could do things he couldn’t. We managed those on a case-by-case basis, deciding when we felt he should suck it up and accept it and when we felt he deserved our sympathy.

  For example, when all the other neighborhood kids started riding bikes, I pushed him to join them. Every kid should know how to ride and I didn’t want him to miss out. We lived on a long, safe street, and that’s what the kids did all summer. But Nathaniel wasn’t enthusiastic and part of his resistance had to do with the helmet. It didn’t fit over his hearing aid, and yet it wasn’t safe (or fun) for him to ride without being able to hear. Russel tried to cut a piece out of the helmet, but the trach was right in the spot where the strap fastened. Then I bought a small helmet that didn’t interfere with the hearing aid, but because of his small chin, the strap kept slipping forward.

  As far as Nathaniel was concerned, the solution was easy: He could ride without a helmet. But I wasn’t about to let him do that. His next proposal was to return to his recumbent three-wheeled bike that that was so low to the ground it could be ridden without a helmet, but I wanted him to ride a two-wheeler, which I felt was an important part of growing up. So I made him wear the annoying tiny helmet that looked like a yarmulke. Since it was unlikely to do any good, I ran alongside him as he biked, ready to catch him at any moment. Needless to say, wearing a yarmulke-looking helmet while your mother runs alongside your bike was not exactly a thrilling scenario for a young boy who just wanted to play with his friends. He’d complain, cry, and call me unfair, but I insisted.

  Sometimes he wanted to use his difference as an out, like when it came to tying his shoes. He was lazy and refused to do it. Jacob, who was seven, was able to tie his shoes, as were their friends, so I insisted that Nathaniel learn. I didn’t want him to be an adult, out with friends, having to ask someone to tie his sneakers so he could play tennis. I couldn’t see him wearing Crocs and only Crocs to college.

  18. Good Christian Neighbors

  This time around, Charlotte was hard for me. Maybe because the school principal there was younger and less experienced, when we suggested writing a letter to the parents of Nathaniel’s classmates, she said, “Okay, sounds good.” That was it, meeting over. She duly forwarded the note we’d written, but we’d been spoiled by Dr. DePalma. Nathaniel’s new principal didn’t take interest in his well-being (it was unclear if she even recognized me when she saw me at school), but the other parents were warm and welcoming.

  Because I’d lived there before, I thought that I knew what to expect from our neighbors, but one woman ruined it for me.

  Our house was in a gated community with 600 houses, each with a similar layout but painted different colors. There were lots of kids who all played together. Directly across the street from our house lived a boy named Luke who was Nathaniel’s age. When the neighborhood kids played in a group, Nathaniel and this kid got along just fine, but it soon became clear that his mother, Liz, had problems with my son.

  They had a trampoline in their backyard, which we could see from the upstairs balcony of our house. One day Nathaniel spotted a bunch of neighborhood kids playing there. He went over and rang the doo
rbell.

  Liz came to the door and said, “We didn’t make plans for a playdate today, Nathaniel.” I could hear her from our doorway. She used a friendly, authoritative mom voice. “We’ll make plans another day.” Then she sent him away as if this were how the world worked and he just didn’t know it yet.

  Nathaniel came home crying. There were no other kids left for Nathaniel to play with. They were all gathered at that one house.

  At school the next day, Luke told Nathaniel that he wanted to be friends but his mother wouldn’t let him. Nathaniel was a sweet kid—not violent, rude, or destructive—so it was clear that the only reason she had shunned him was that she was uncomfortable with the way he looked. I had infinite understanding for any child having this reaction—a young person might need some time and guidance to get used to Nathaniel. But in this case, the boy wasn’t the issue. His mother was the one who couldn’t handle it. As an adult, that was her burden to bear, but she placed that burden on my child. It was incomprehensible.

  When it was Luke’s birthday, Liz went so far as to arrange two parties. One was at her house and included Nathaniel. Another took place outside the house—maybe they went bowling or to a play space, I didn’t know. What I did know was that Nathaniel wasn’t invited to the second party, even though every other kid in the neighborhood was. This absolutely mystified us.

  Russel, who is the opposite of shy, asked her directly. “Why did you invite my kid to one party and not the other?”

  She said, “It’s my son’s special day. If Nathaniel were there it would take attention away from him.”

  When I heard that, I was speechless.

  Russel and I had the conversations you’d expect: Maybe we’re imagining this. Maybe Luke wasn’t available when Nathaniel rang the doorbell, but his schedule changed. Maybe there was only room for a limited number of guests at the second party. Then Nathaniel befriended another neighborhood kid, Jake. Jake had Duchenne muscular dystrophy, a difficult, progressive disease. Russel found out from Jake’s father that Liz treated Jake exactly the same way. It was an oddly validating moment, to have another parent of a disabled child say, “You’re kidding me. You too?” This woman was truly shielding her kid from Nathaniel and Jake because they were different.