We tried to address it in a civilized fashion. There was a conversation in their home. Liz said, “Being friends with Nathaniel is just too intense for Luke. I don’t want him to have to deal with that.” She tried to justify limiting their time together, to us and, I think, to herself.
The tipping point came when Russel arrived home one day to find Nathaniel and me both upset over another exclusion. He went upstairs to the balcony and watched for Liz’s husband to show up. When he did, Russel went over to their house, got up in his face, and yelled, “You’d better talk to your wife! My son is hysterically crying because of her and the way she treats him. He doesn’t have enough to deal with? Now I have to worry about this?”
The whole neighborhood could hear what was going on—I could see them peeking out of doorways and around hedges.
Russel went on, “She claims she’s a good Christian. You married an evil bitch. I’m not going to touch her, but I’m going to beat the shit out of you if she doesn’t stop treating my son like dirt.”
I was embarrassed. “Please stop,” I told Russel and dragged him back to our house.
As we passed their next-door neighbor, he said, “Good for you, Russel, I hate that woman.”
Liz was the only person who ever made Nathaniel cry. She was deeply religious and went to church every Sunday, and yet, outside church, she lived by a logic that would never make sense to me. If Nathaniel had a surgery, she’d tell me that she’d prayed for me, as if being a good Christian made the rest of her behavior toward him unassailable. But I’ve met a lot of amazing Christian people. Karen, a friend from our first stint in Charlotte, had true Christian values. She checked on me every day, offered to help with the kids, and truly cared about me. When I was declared cancer-free, she showed up with her family and brought a cake. My next-door neighbor Diane was always kind to me. She was into being healthy and knew I was too, so she brought over smoothies that she made in her Vitamix and invited me to jog with her. But Liz’s treatment of Nathaniel made me want to sell our house and move away.
I ended up going over and apologizing to Liz and her husband for Russel’s behavior. But knowing that any day she might do something to hurt Nathaniel shaped my days.
One of my neighbors often asked me to join her in an afternoon glass of wine before the kids came home from school. This always sounded like a perfect way to take my focus off Liz. One glass turned into two, sometimes more. Life was better when I had a bottle of wine, but it was an artificial solution. When the children arrived, I was already a little tipsy, which made me too self-absorbed to care about the details of their days. I lived on the surface, where nothing hurt.
Eventually, I asked God for the strength to stop drinking. The period of my children being little and dependent on me would be so short and I didn’t want to miss it. We didn’t need exotic vacations, horseback riding lessons, or French classes; all I wanted was to have a real connection, where we could talk and know each other. So we did: We went online together to research what makes people successful. We talked about drug and alcohol abuse. I pampered them by giving them baths, one at a time, while I sat on the edge of the tub and heard about their days. We didn’t need more than that.
We persevered. We got a dog. I taught exercise classes. There were plenty of distractions, and I tried my best to face us in a different direction and to empower Nathaniel. I worked hard to give him a normal social life, hosting make-your-own-pizza parties and cooking dinner for all the neighborhood kids. And I have to admit I bought him the most coveted toys to give him a leg up on making friends.
In the afternoon, Nathaniel would ride his miniature jeep in a loop around the neighborhood. Every kid wanted a ride on that jeep. One day a kid crashed it into a wall, and after that Nathaniel wouldn’t let anyone else drive, but he was happy to chauffeur them around. I couldn’t control my neighbor, but I could put my son in the driver’s seat.
19. A Marathon, Not A Sprint
Dr. Bernstein, Nathaniel’s ENT at NYU, was a true gentleman. He dressed immaculately. He had a calm, assuring voice. And he had very soft hands. Whenever I shook hands with him, my hands felt like sandpaper compared to his. Jenna and I joked that we’d have a crush on him if we weren’t all married. Our last visit to Dr. Bernstein had been while we were still living in Connecticut. He had already tried more than five or six times to open up Nathaniel’s airway, without success. During that last appointment, a month before we moved back to North Carolina, we sat in his office to discuss what next steps we might take to try again, but before we got very far, he stopped.
He said, “Russel, Magda, when I became a doctor, I took the Hippocratic oath: First, do no harm. But I have fallen in love with your son. I’m too close to him, and because of that I can no longer give you an unbiased medical opinion as to his treatment. I find myself discarding options because they’re too risky, but another doctor might see the risks more objectively. Nathaniel’s case is complex; maybe there is someone better for him out there.”
Dr. Bernstein sent us to Dr. Robin Cotton at Cincinnati Children’s Hospital, who he said was “the” guy in the world of ear, nose, and throat doctors. Working with him was a doctor named Kaalan Johnson who was completing a fellowship in pediatric otolaryngology. Our ultimate goal was still to achieve the breakthrough that the doctor in Charlotte was attempting when he accidentally poked a hole in Nathaniel’s brain. (I swear I won’t mention that again.)
Drs. Cotton and Johnson and their team carefully mapped out the bone structure of Nathaniel’s face to make sure no such thing happened again. They spent over a year gathering data, taking CT scans, tracking Nathaniel’s growth, and planning for the surgery. Surgeries. They told us he would have one big surgery, to open his airway. It was the most complex procedure he’d had up to that point. Then there would be eight to ten smaller follow-up surgeries to repeatedly clear away the scar tissue and new bone that would immediately threaten to fill the hole that the doctors created. If you looked at it from the outside, it seemed so simple: All they wanted to do was to open a bone blockage in his nose. But the structures in his face were so close and out of whack compared to a normal person’s that there was a significant risk of damaging his vision or brain.
We couldn’t afford to fly from Charlotte to Cincinnati for all those appointments, so we made the ten-hour drive many times over the course of a year. Sometimes Jacob and our cockapoo, Smokey, stayed at my in-laws’ while Russel and I did the long drive with Nathaniel, but usually I stayed home while Russel took him.
When my kids were little I told them to open their imaginations to the hidden worlds that were all around us, and on those car trips I saw that pay off. To pass the time, Nathaniel invented a warrior combat team. All the kids in the neighborhood had specific roles and powers, and their shared goal was to defend Cincinnati from evil forces. His imagination was his refuge when he was bored, a decent substitute for playing with his friends. Then, when we got home from seeing the doctors, he’d fill the kids in on the status of their battle, and they would all disappear for hours to continue their story.
Growing up in Poland, we had a TV, but there wasn’t any children’s programming so I turned to books for entertainment. I consumed all forty-seven of a Scandinavian fantasy series called The Legend of the Ice People. Tellingly, in their witchy culture, every time a child was born, the mother would die. (It was only when I had my own children that I recognized that as a metaphor.) There was a good prince in those books, a hero with superpowers, whom I fell in love with. His name was Nathaniel, and that’s where I got the idea that one day I would have a son and name him Nathaniel.
Now that real boy, the namesake of the boy in the books that had inspired me, was writing his own legends. I’ll never forget the day I drove us to Cincinnati in crazy pouring rain. It was so torrential that I wondered if I was putting us in danger by making the trip. But the appointment was already scheduled and Russel had taken time off work to be with Jacob, so rescheduling seemed more difficult th
an powering through.
Nathaniel spent the entire ten-plus hours regaling me with the story of one single, epic battle. It was raining so hard that I could barely see the road, and I wanted to focus on my driving instead of Nathaniel’s story. Silently, I prayed for a pause, perhaps a nap, maybe a quiet musical interlude. But no, only as we finally reached our destination was Cincinnati saved!
Of course, I knew these games were a vital escape from boredom and distraction from the medical world. That’s why I wasn’t exactly surprised that when the doctor asked Nathaniel if he had any questions about the surgery, Nathaniel politely asked if they could give him Spider-Man fingers at the same time as they worked on his nose.
The day of the big surgery finally arrived. It was during Nathaniel’s winter break from third grade. We drove up from Charlotte and checked in to the same Embassy Suites we’d stayed at during the preparations. It was in Covington, Kentucky, right near a bridge that crossed the Ohio River into Cincinnati. In the middle of the hotel lobby was a large cage hosting Emmy, the resident male (yes, male) parrot, with whom Nathaniel always loved to have (rather limited) conversations.
We were all very experienced OR visitors by this point; we had it down to a science. As we headed through a pediatric hospital to the pre-op room, we would pass other rooms in which parents were waiting with their children. You could see panic on their faces, even for a tonsillectomy. In contrast, our pre-op room was always a lively show. Whenever Nathaniel was going under general anesthesia, we’d take advantage of it by squeezing in multiple procedures, so within the hour before surgery it was like Grand Central Station in there. We might have a gastroenterologist, an anesthesiologist, a craniofacial surgeon, a general surgeon, an ENT, a plastic surgeon, and a dental specialist all rotating through to check on Nathaniel.
Sitting on my lap, Nathaniel would politely acknowledge them then go back to playing on his Nintendo DS. The hospital had plenty of video games for kids to play, but Nathaniel always returned to Mario on his DS. Russel would be in surgical garb, ready to escort him to the OR. He’d talk to everyone, somehow reaffirming details of the procedures and asking questions about their spouses and kids at the same time.
When Nathaniel began getting nervous, he’d start some superhero narrative. Meanwhile, I’d try not to be distracted by the image of his little body in that big room surrounded by all those strangers, and the fear of everything that could go wrong. I’d nod my head and ask about the superheroes, “And what was that one’s power?”
“Mom, I just told you.”
Nathaniel: Once when I was little, I had a surgery scheduled for 11:00 a.m. You can’t eat for eight hours (or drink clear fluids like water or apple juice for five hours) before general anesthesia, so the last meal I’d had was dinner the night before. The surgery was delayed . . . and delayed and delayed. We were waiting in a boring pre-op room and I couldn’t eat the whole time. Finally, they told us the surgery had been rescheduled for 4:00 P.M. So not only did we have several more hours to wait in the boring room, but I still wasn’t allowed to eat. Dad was really mad. I could see that he was about to give the nurses a piece of his mind. I was hungry, and for some reason I was craving Indian food. But I figured if there was a delay there was probably a good reason. I was pretty sure the doctor wasn’t sitting in an ice cream parlor, having trouble deciding which flavor he wanted to order.
I said, “Dad, if the doctors are late there is probably a little boy in the operating room who needs them more than me. I’m fine, Daddy, we can wait.”
Remembering Nathaniel’s patience in that moment always makes Russel cry. When he cried, as he often did, or got angry, I rolled my eyes, feeling a little embarrassed. I usually don’t show emotions; I’m only cuddly with my children and dogs. That’s how I was raised. My parents are the same way.
Americans tend to judge intelligence by how educated people are. And, to generalize even further, globally thinkers often congregate in big cities to collaborate and promote their ideas. But in the part of Poland where I grew up, close to the Ukraine border, for a long time there was no chance of higher education. For generations, my family has been farmers. The Communist government was strict about what was taught in school. We didn’t even learn the full scope of history in grade school—we just learned pro-Communism history.
But what we lacked in education, we made up for in street smarts. Or, more accurately, it fell on the women in particular to be the intellectual pillars of the family. Mothers used the dinner table as a place to instruct their sons on how to behave and what to do. Women were wise and strong leaders of the household, but the way they led was through their sons. They were the brains behind the men’s hands. My grandmother was functionally illiterate, but she guided our family. Everything my family has—the land, the house, the drive to be educated—we have because of her. She raised seven kids in the middle of nowhere, and every one of them went to university.
I saw emotions as weakness, and it was important to me to be strong for my son. I didn’t want Nathaniel to see me cry before surgery, and I wanted to appear tough to the doctors and nurses, so I put up a shield. It took me a while to get there—I cried a lot during the first year or so of Nathaniel’s life—but after that I told myself it was time to step up. I had no more tears left to cry.
I had no excuse to pity myself—I wasn’t the one going through surgery—and I wasn’t going to pity him because I didn’t want him to feel sorry for himself. Maybe it’s those Polish farmer genes, but Nathaniel turned out like me. He doesn’t get emotional. He doesn’t cry. He is tough, like a rock. I tell him it’s okay to show emotions, but that’s the way he is. He tells himself, This is how it’s going to happen, and I’ll get through it.
Russel’s emotions come from going down the path of “what if.” What if Nathaniel had been born without differences? What if something goes wrong in surgery today? I am more pragmatic; I don’t do “what if.” But the upside to Russel’s intensity is that he is always connected. The cliché is that a father who has to earn enough money to support the huge medical costs of a family like ours would check out, making the office his domain and leaving not just the household work, but also the household feelings to his partner. Russel was in it as much as I was. Furthermore, he counter-balanced my tough shell by making friends left and right, wherever we went. Then, in emergencies, when I couldn’t keep it together, we switched roles entirely: I fell apart, and he was the rock.
From the time Nathaniel was a baby, whenever he’s had surgery, Russel gets into a gown and carries him from the pre-op room into the OR.
By now, the doctors and nurses at the hospital knew all our rituals. There was one woman with pink hair who sat at the front desk who knew how much I liked warm blankets and always brought them to me. She didn’t have to do that, but she did. She also knew I slept through every surgery. When Russel took Nathaniel into the OR, she pointed to a corner and said, “That’s the quietest area. Go to your spot and take a break!”
The hospital might have fourteen operating rooms, and Nathaniel is inevitably in the one at the end of a long hallway. Russel swears that as he carries Nathaniel, the hallway gets longer, and, skinny as Nathaniel is, the stress makes Russel break a sweat. In his father’s arms, Nathaniel goofs around, which is his way of taking himself to some other place, but he never ever resists or makes a fuss.
Nathaniel: For some reason, on the way to the hospital room my legs feel like toothpicks and I can’t stand on them, so my dad carries me. It’s always the same. The OR is a big room, all cold metal and machines. There’s a viewing balcony and giant flat-screen TVs with images of my skeleton. There are huge lights, and white sheets draped over the trays of knives and scissors. I guess they don’t want me to see the tools they’ll be using to destroy—I mean improve—me. There might be six to ten medical professionals in scrubs, playing with knobs on various machines. Once we’re in the operating room, Dad sits on the table with me on his lap, ready to attach the gas to my trach. The
gas is what puts me to sleep for the surgery, and I’m always nervous to take it. It doesn’t hurt, but knowing I’m being put under makes me feel kind of sick, so that’s when I bring out my best delay tactics. I ask every doctor in the room about their roles, what all the machines are, why there are pink beads in the anesthesia machine, etc. I’m at my most inquisitive when I’m stalling. Dad lets me hold things up for a bit, but eventually I take a deep breath and tell him I’m ready. He sits with me on his lap while they hook the gas up to my trach.
The doctors are taught to watch for physical phases as the anesthetic knocks the patient out. I’m never in the OR, but Russel tells me that the anesthesiologists always get a kick out of Nathaniel’s narration of his own condition. He walks them through every stage that marks his progress: “My voice is starting to change. My muscles are starting to feel stiff.”
The anesthesiologist turns to Russel and says, “He’s giving me the play by play!”
Nathaniel: When the IV first goes in, I feel fine, and then it kicks in all at once. I know in five seconds it will ram me.
Sounds start morphing from echo-y to robotic.
It’s almost like I’m watching a video of me talking—I know what I’m saying but can’t quite control it.
Then Dad’s hands feel clammy.
Then I start feeling like it’s not happening.
Then I get really dizzy and start to slur my words.
Then I fall asleep.
Normal Page 14