Normal

by Magdalena Newman

  —My jawbone is really, really small. So is the inside of my mouth. The shape of my mouth, palate, throat, and airway is all a bit different. As a baby it was hard for me to eat and breathe, but I figured it out and now I eat like all the other kids at school.

  —One really serious thing I have to tell you about: Remember how I said I have some extra bones? Mine grew in a pretty yucky place: the back of my nose! I have a really cute nose on the outside, but on the inside there’s a wall of solid bone at the back. This one has a hard name to say: complete bilateral choanal atresia. It does make some stuff real hard for me, especially breathing. That’s why they put a hole in my throat with a cool tube sticking out of it. It’s called a tracheostomy. At school, I wear a nifty purple cap over it so I can still talk real loud, and it helps me keep dirt out.

  The letter may have been too long, but better to err on the side of too much information than not enough. We gave the parents suggestions for what they might tell their kids: not to stare and not to touch the trach or hearing aid. We also explained that because of his nose being blocked, sometimes it ran and he didn’t notice it. If his nose was running, instead of laughing at him, the kids should just tell him to wipe it and he would.

  Finally, we asked them to treat Nathaniel like everyone else. We told them Treacher Collins didn’t impact his mental or emotional development. And we finished by saying they could call with questions.

  The letter helped set up Nathaniel for an easy entry into kindergarten. If the parents communicated some or all of it to their kids, then everyone would know that someone who was different would be showing up, nobody would be caught off guard, the parents would have a chance to answer questions, and we could avoid some of the uncomfortable stares.

  If you think about it, how many parents send their children off to school hoping their classmates will embrace their differences and welcome them? Most kids have doubts and insecurities, but Nathaniel’s struggles were on display. What would it be like if everyone could write a letter to their future classmates saying, “Here are the unusual things about me. Please don’t be scared. Ask me anything you want. I just want to make friends and play”?

  On the first day of school, we went to Nathaniel’s classroom and introduced him to his classmates. I sat in a circle with them on the floor and asked, “Do you want to know why Nathaniel looks like this? It’s just the way he was born.” Then I said the same thing I would say to curious children for years: “Touch your face. Feel your cheekbones. Nathaniel doesn’t have cheekbones like you. That’s why he looks different. That button on his neck helps him breathe. Please don’t touch it. And the other button is his hearing aid.” When I was done, I asked if they had any questions.

  “I’m scared of him,” one boy ventured.

  “I’m sorry you feel that way,” I said. “Why are you scared?”

  “He looks scary,” the boy elaborated.

  I said, “He looks different, but different doesn’t have to be scary.”

  Nathaniel didn’t react much during this conversation. He waved hi when we sat down and smiled in a friendly way but, as always, didn’t take a big interest in his own difference.

  Later that year, Dr. DePalma said to me, “I know you’re a good parent, even though I don’t ever witness your parenting. I can tell by Nathaniel, his manners, how he interacts, how he listens and plays.” No authority had ever told me that, and it meant a lot to me. There was no parenting book for my situation and I always felt like I was flying by the seat of my pants. It was nice to get a “good job!”—I hadn’t even realized how much I’d needed it.

  Dr. DePalma was brilliant and the school community was supportive, but outside of that, the beginning of elementary school was the worst point in Nathaniel’s life when it came to being out in public. At the playground, in movie theaters, kids would point at him and say “Eeewwww.” Some would cry and ask to leave. Parents were sometimes embarrassed, but we tried not to be sensitive to it. Just as I had with Jenna’s daughter Emily, it’s natural to have a reaction when someone looks dramatically different.

  Also, children are naturally curious. As we get older, we learn to temper our reactions and be more sensitive to the feelings of the people around us. Learn is the key word here. If a kid looked at Nathaniel with fear, curiosity, or a mix, I spoke to them the same way I’d spoken to the children in his class: “This is Nathaniel. He’s six years old. He was born this way. Do you want to know what’s going on with his face? He has a syndrome called Treacher Collins . . .”

  It wasn’t my personal mission to explain Treacher Collins to all the children on all the playgrounds of the world, but I thought it was worthwhile to do a little grassroots campaigning. Discomfort is a natural human response—if I, his mother, experienced it when I first saw him, why shouldn’t other people? My goal was to help parents and children move past that moment as quickly as possible and see Nathaniel for who he was, just like we did.

  The best way for children to learn empathy is from their parents, and the ones we met would often take the time to show their kids there was no reason to be scared or stare, and they should just treat Nathaniel like a fellow child. But some parents were clueless. When Russel was in a good mood, he’d say to one of those parents, “This is a teachable moment. If your child says, ‘Ooh, you look terrible. Were you in an accident or a fire?’ you can gently guide them. It’s okay to say, ‘Do you mind if I ask you a question? What’s on your neck?’”

  But Russel grew up as a construction worker’s kid with a self-diagnosed Napoleon complex. He was a hair-trigger fighter, and sometimes it was hard for him to hold back when a kid would say something like, “You’re a freak!” or “You’re a monster!”

  If the mom or dad didn’t get involved, Russel would go over and confront them. “You heard what your child said and you’re just sitting there.”

  The parent sometimes responded, “What do you expect him to say? He’s just a kid.”

  This happened two or three times every week, and it brought Russel to the edge. One time he came home and told me that he was about to sock some rude father, but he looked at Nathaniel and saw absolute fear in his eyes. He didn’t like seeing his father so angry.

  Russel continued, “All he wanted to do was play and have fun, and I was about to punch a middle-aged dad in the face because he was too stupid to teach his kid not to be rude. I thought, Whoa, this is exactly what I don’t want him to do when people treat him badly, and I stopped myself.” Now, he says proudly that by the grace of God and Nathaniel, he never had a physical alteration.

  But occasionally, when Russel became frustrated by an older kid or adult who was staring, he’d pretend not to notice, then suddenly turn and bark right in their face like a dog. He called it a stare stopper. Weird, yes, but it definitely did the trick.

  Jacob remembers being very small and seeing little kids stare wide-eyed at Nathaniel for up to two solid minutes. If they asked their parents what was on his neck, sometimes Jacob would answer. But if they started reaching for the trach, he would put his small body between them and defend Nathaniel until the nearest grownup took charge. When he got older, he liked to do the stare stopper with Russel.

  In no small part because of Nathaniel’s personality, the social issues we encountered never pierced the surface for us. We went wherever we wanted to go, and we sent Nathaniel into new situations without hesitation, not worrying about how strangers or new schoolmates might react. We handled rude reactions the way we would handle an annoyance like poison ivy: unpleasant, unwelcome, but easily soothed.

  Nathaniel lives in his own world, where nothing is ever wrong. When he walks down the street, he only notices the good things. If someone is standing there cursing and someone else is walking a puppy, he only sees the puppy. He’s accustomed to the stares and double takes when people first see him because he’s gotten them his whole life—and if somebody says something mean like “his face is weird,” he might give them a look, but keep walking, unbothered
.

  Jacob seems to be wired differently. If he’d had Treacher Collins, he’s sure he would have had a panic attack before every surgery. Curious toddlers would have angered or saddened him, and he thinks that after a while he would’ve become so tired of it that he would verbally and physically attack people. He doesn’t think he’s as resilient as Nathaniel—when he’s playing lacrosse, he loses his temper when things don’t go his way. (It’s something he’s working on.) But we’ll never know if Nathaniel was born equipped to deal with his challenges, or whether he rose to meet them because he had to.

  Nathaniel: My face was familiar to Jacob from the day he was born. He was the one person who had no idea that I was different until he saw people picking on me. He remembers that when he first heard people saying mean things, he looked at my face and couldn’t see the difference. He’d been around people with craniofacial differences his whole life. Jacob grew up blind to “normal.” But if you tell me I should feel grateful to have a little brother who always saw me for who I am, I will tell you that he’s still a little brother, not an angel.

  The way children reacted to Nathaniel wasn’t the only way his school experience was different from other kids. A nurse, paid for by the school district, had to be within a few feet of him at all times. The g-tube was gone, but he had a very expensive hearing aid that couldn’t get wet or damaged, and the tracheostomy, which had to be suctioned if it got clogged or immediately replaced if it got dislodged. Unfortunately, the trach button was either red or purple, depending on which valve he was using, and because these colors were tempting, sometimes a kid on the playground would try to grab it. The nurse was there to intervene.

  We lucked out. Lisa Nowak, the nurse supervisor for the school district, happened to be based at Nathaniel’s school. She picked his nurses—one came three days a week, another the other two. Lisa wasn’t warm and cuddly, but she was very organized and thorough: We had to provide numerous forms for her files, and if one was missing, she definitely wanted it. If anything happened to our son, it was reassuring to know that she was in the building.

  Being Nathaniel’s safety net was a full-time gig. In the summertime, when noses don’t run, I’d only have to suction his trach maybe ten times a day. But if he was sick with a cold or a flu, or if it was humid, it could go up to seventy times. When he was sick, I would sleep next to him. In the middle of the night, half-asleep, I’d hear the raspy noise of mucus stuck in his throat. On autopilot, without getting out of bed, I would disinfect my hands, suction him, and fall back asleep.

  At school, the nurse was the keeper of the suction, and she followed Nathaniel everywhere, including recess and the bathroom. Some nurses gave him more freedom than others, but they had to be strict when it came to the hearing aid. He could never wear it outside in the rain. He couldn’t play sports and he had to be careful at recess.

  He was only six, so he barely noticed that his experience was different. When you’re that little, it’s not that weird to have a grownup shadowing you; most kids are used to having a parent or a babysitter with them at all times until kindergarten starts. In Nathaniel’s case, his personal caregiver just never went away. He also received other special services from his IEP (individualized education program). He had speech therapy for a few years; he took tests alone; and a psychologist monitored him to make sure he felt comfortable in school and was developmentally on track.

  Nathaniel was legally deaf without his hearing aid (and legally blind in one eye, for that matter). I worried about him not hearing approaching cars—I had the city put “Deaf and Blind Child” signs on our street—but when he started school we realized something else. His hearing isn’t directional. That means he hears all noise as if it’s coming from the same place (no particular place) and the same distance (no particular distance). We knew this already. It drove him crazy in movie theaters because it was hard for him to separate the whispers of people in the audience (or popcorn-munching, or worse) from the voices on screen. But we’d never thought about how this difference would come into play at school.

  If a teacher stood behind him and said, “Hey, Nathaniel, look at me. Can you hold your pencil just like this?” he would have no idea where the sound was coming from. It doesn’t seem like a big deal, but being six years old in a kindergarten classroom is already chaotic and confusing enough. Not knowing where sounds were coming from dumped an extra dose of mayhem into the mix. After a couple of months, we solved the problem by finding him a different hearing aid that you could set to a specific channel. The teacher wore a special microphone that she could tune to that frequency, which elevated her voice above the background noise.

  To be honest, the transition to school was harder for me than it was for Nathaniel. I was scared that he’d fall, tussle with another kid, or get caught in the rain. An everyday misstep could be life-threatening for him. I wasn’t the only parent who had trouble leaving the classroom on their child’s first day, but because Nathaniel was more fragile, the stakes for us were higher.

  For the first month of school, I timed Jacob’s walk in his stroller to Nathaniel’s recess on the playground. This was my way of covertly making sure he was out there with the rest of them, having fun and still breathing. Eventually, I legitimized my spying by volunteering in his classroom and the school library, and teaching a yoga class to the students.

  16. The New Me

  In Connecticut I came as close to building a dream life as was possible. Every mom knows that sending a kid off to kindergarten buys some measure of freedom. I had that, but supersized, given my new lease on life. Jacob and I walked Nathaniel to school every day. On the way back I’d stop at the Russian supermarket for Polish cold cuts. When we got home, I gave Jacob a snack, then it was naptime. Afterward, he might have a playdate.

  The kids and I started a garden, planting strawberries, blueberries, tomatoes, and peppers. Jacob was more into this than Nathaniel. He loved to cook and clean and do household chores, whereas Nathaniel preferred to live in an imaginary world. I bought them cute watering cans, gardening gloves, and rakes. Nathaniel would pull the rake three times and call it a day. Jacob would water the tomato plants and check for tomatoes, then come in and say, “Mom, let’s make something with these peppers.”

  We’d make a stew and at dinner I’d say, “Jacob grew these,” and he’d beam with pride. If my second son was subconsciously looking for his own special connection with me, this was where he found it.

  I bought myself a chainsaw and got rid of seven stumps in our yard. (Daughter of a farmer; it’s in my blood.) Figuring the best way for the neighborhood kids to accept Nathaniel was to make our house the “fun” house, Russel and I salvaged an old rickety wooden swing-set. He power-washed and resurfaced it. I spread old sheets on the ground and laid out paint, brushes, sponges, and other tools for painting on them. Smocked in Russel’s old shirts, the neighborhood kids went to town decorating the swing set, even painting the slide. After they left, I would repaint it brown, so they could do it all over again. I set out sprinklers for them to run under, and I took the boys and their little friends to the beach, which was only forty minutes away. We gathered seashells and stopped for ice cream in the afternoon. When we got home, I’d drill holes in the shells, then we’d have kids over for a shell-painting party, stringing them into wind chimes.

  In walking distance from our house was beautiful Elizabeth Park, where we spent a good chunk of the weekends in spring and summer. We had picnics among the blooming tulips and roses, and listened to outdoor concerts.

  Most everyone in West Hartford recognized our family because of Nathaniel. The first Christmas in that house, we didn’t have much money, but we spent more than we could afford on a child’s jeep. Very often we would walk to town, Nathaniel driving his jeep and Jacob in the stroller, to get ice cream, go to the movies, or stop by the library. Sometimes we would have Nathaniel’s favorite mac ’n’ cheese at a restaurant called the Elbow Room, where we would sit on the rooftop overlooking the
Main Street of our cute New England town.

  That first winter, the kids discovered snow and sledding. Jacob would go down a hill three times and come to me shivering and done, but Nathaniel would go until his lips were blue and I insisted we head home for dinner.

  When I had cancer, I promised God that if I lived, I would do some good in the world. Being told I was dying at twenty-seven years old had made me like an old lady fighting death. From then on, I felt compassion for old people, forgotten like shadows. During chemo, whenever I felt well enough, I taught piano lessons to seniors at the Jewish Community Center.

  Now I had the chance to give back in my new city. Instead of going to church, I wanted to find another way to do something kind. There was an assisted living facility near Jacob’s preschool, so one day I walked in and told the person at the front desk I’d love to come volunteer once or twice a week.

  They ran a background check on me and when they determined that I wasn’t a psychopath, I started visiting on Tuesdays and Thursdays, when Jacob was in preschool. I played piano for them. I brought in nail polish to paint the old women’s nails crazy colors, and soon even the men were asking me to paint their nails. There was a one-legged ninety-eight-year-old woman who was sharp as a tack. She invited me to her room and showed me photos of her family.

  “They only visit twice a year,” she said.

  “Is there anything I can do for you?” I asked.

  She said, “I’m dreaming of a doughnut.”

  I loved this. “What kind?”

  “One from Dunkin Donuts, with the jelly inside.”

  “Why can’t you have one?” I inquired. I couldn’t imagine why they wouldn’t give this ninety-eight-year-old a doughnut.

  She said, “I’m diabetic. That’s why I don’t have a leg.”