Once, early on, Nathaniel got a trach infection. I had suctioned him forty times in one day and saw that soon I was going to run out of suction catheters. I couldn’t suction him without a new catheter, and if I didn’t suction him, he wouldn’t be able to breathe. It was a weekend, which meant I couldn’t call the supplier for overnight delivery, and we couldn’t just walk into a drugstore to pick up more. In a panic, I called my new friend Jenna.
Jenna’s daughter Emily, who was two years older than Nathaniel, also had Treacher Collins. I didn’t know many families with kids who had the same syndrome as Nathaniel as most of the people I saw in the waiting room at NYU were there for cleft lips and palates. But even when I did see craniofacial families, I didn’t socialize with them, mostly because I was too focused on Nathaniel, but also because some of them had a different attitude than I did. They would say, “We’re so blessed. Thank you, God, for giving us this child.”
I had a hard time with that. I would sit there thinking, Are you serious? You don’t have moments when you question God? Their attitude seemed so fake to me. So it was great to find another mother in a similar situation who spoke my language.
When Nathaniel first got his trach, I was still having a hard time coming to terms with the life my baby had ahead of him. I was ridiculously focused on his face more than on the medical issues. How would he lead a happy life being so deformed? How would he find his way socially? When I called Jenna, her calm, sweet voice comforted me.
She began telling me about her daughter. “Emily goes to preschool. Her body and mind are fine. She does this, she does that.” She reassured me that Nathaniel would have friends, he’d go to school, he’d be able to swing at the playground. As she spoke, I began crying with relief and joy. It would be okay. He’d have a normal life.
Jenna and I clicked, and from then on if I wanted to cry to someone, I called her.
When we ran out of catheters that Saturday night, I called Jenna and asked if she had catheters left over from when Emily had a trach. She did, so even though it was the middle of the night, Russel drove over to her Brooklyn townhouse—about an hour away—to pick them up.
When he got home two hours later, he dropped the box of catheters on the kitchen counter and crashed. He only had a couple hours to sleep before he left for Long Island. His brother was finishing his basement, and Russel had promised to help with the drywall. I stayed home with Nathaniel.
The catheters were in the same factory box that mine came in, still sealed. Later that morning, when I needed one, I used a knife to slice through the sealing tape. The moment I pulled up the first flap, hundreds of cockroaches flew out at me. My hand was instantly black with them. It was like a horror movie. I freaked out, flinging the roaches off my hands. I grabbed Nathaniel, the bag with the pump in it, and my phone, and escaped from the apartment. I called Russel from the hallway.
“They’re everywhere!” I screamed. “Help!” Russel thought I was being murdered. It took a solid minute of screaming before I managed to communicate to him that I was living my nightmare.
“Okay, Magda, go back in. Get your wallet and keys. Make sure you have everything, then leave the apartment.”
Following his instructions, I went back in and discovered the roaches had formed a long line, hundreds of them marching down the kitchen counter and across the floor. I grabbed my stuff and closed the door behind me. If they wanted the apartment, they could have it.
Back out in the hallway, I did my best to clean a used catheter and suctioned Nathaniel. I was supposed to use a new catheter every time, but I decided that a dirty catheter was better than roaches.
Russel ditched the renovation and came home to help me. We called an exterminator and scheduled him to bomb the apartment.
Meanwhile, we packed up our bags and supplies and went to Russel’s parents’ house on Long Island. En route, we called Nurse Pat at NYU. Nurse Pat Chibbaro was one of our favorite nurses and she’d become a friend. We begged her for enough catheters to get us through the weekend, then drove to the hospital to pick them up. It wouldn’t be the last time we turned to our medical family at NYU for emergency supplies.
6. A Different World
The world is not always kind to a woman with a special needs baby.
I went to NYU often, sometimes three times a week, to make sure Nathaniel’s equipment was in good order and to check for infections. From Hoboken, I would take a twenty-minute commuter train to Penn Station, then walk crosstown from the west side of Manhattan to the east—about a mile.
One time I took him to an appointment during an absolutely miserable snowstorm. It was bitterly cold, and I was already feeling sorry for myself because nobody had offered to help me carry the stroller up from the subway. It had equipment hanging from both sides, and as I struggled to haul it up the stairs, a grey stream of Wall Street commuters pushed past. Exiting Penn Station, I saw that the sidewalks hadn’t been shoveled and I knew it would be impossible to maneuver the stroller. I would have to take a cab.
The cab line was very long. Nathaniel was bundled up, but I was worried about him, and I was so cold myself. I looked around plaintively, but everyone pretended not to see me. Not a soul offered to let me go ahead. I went to the front of the line and said, “I have a baby. It’s so cold. Can I please take one of the next cabs?”
They all shook their heads: No, sorry. We’re in a rush.
It became clear that nobody was going to help me. I was utterly alone.
I called Russel. “What am I supposed to do?” I choked through sobs. “Nobody is helping me.”
“Go to the front of the line,” he said. “Don’t even ask. Just get in the next cab.”
He was so clear and certain in that moment, but later he would tell me that he was at a loss. What was the right thing to do? Should he ditch the meeting he was in and run across town to help me?
From the outside, it looked like we divided responsibilities along “traditional” gender lines: I was the daily caregiver, the primary parent to feed and nurture Nathaniel. I handled supplies and fought the daily battle against bacteria to avoid infections. Russel was the provider. He also kept track of the details of Nathaniel’s medical record, paid the bills, argued with insurers. And he was always the first to learn all the medical procedures. Russel worked; I stayed home to care for the children, cook, and clean.
But Russel often struggled with his role. Should he come home and help me when I was at my wits’ end, or should he give everything to the career that would provide for his family? Early on, every time we went to the hospital, we were surrounded by families who were completely reliant on Medicaid, Medicare, food stamps. Russel didn’t want that life. He knew that it would take a lot of money to care for our family, more than he was making, so he decided that from eight to five every day his responsibility to us was to excel in his career. That’s why he didn’t come to Penn Station to help me, and he often couldn’t be there with me when Nathaniel was sick. Though he went to every single surgery, there were infinite in-betweens when he couldn’t be with us. We survived, but Russel always felt like he was letting us down. And yes, I wanted him there—he was the only person I trusted with Nathaniel—but it was impossible.
Calling Russel on the phone was my best lifeline, but I didn’t have the moxie to take his advice and cut the taxi line. I couldn’t believe that no one would help a mother with a baby, especially in that weather, but I didn’t want to make a scene. And so I walked. By the time I got to the hospital my cheeks were red, my feet were wet, my fingers frozen. I went into a room with Nurse Pat and cried. “People are so mean. I don’t know how I’m going to do it.”
That first year I was kicking hard to keep my head above water, and when I paused, often it was only to see how far away I still was from dry land. On another snowy day, after one of Nathaniel’s appointments in the city, I was walking home from the train station in Hoboken. I knew Nathaniel and I were both starting to get colds, so I stopped at a local pediatrician
that was near our apartment. For all the specialists we had access to in the city, for something as mundane as a cold, this office, with its two nice Polish doctors, was the easiest resource.
The waiting room was full of moms, each with a seemingly perfect baby and a textbook reason for being there: a checkup, a spot of eczema, a cough. I took Nathaniel out of his stroller and put him on my lap. His thin, sweet arms; his face swollen from his most recent surgery. In unison, the other mothers averted their eyes, pity and relief on their faces. This life, the winter, the medical equipment surrounding me, all of these people with these perfect babies. I sank into self-pity, down, under water. The doctors guided me to a private room where I wailed in Polish, “It’s just so bad. Why did this happen to me?” They offered me the only comfort that there was: He was alive, he needed me, it was hard, I would have to be strong—the only comfort there was to offer. It was nothing revelatory, but hearing those words in my native tongue helped carry them to my soul.
How often, settled on the subway, would this happen: I would catch the eye of another mother, her baby neatly tucked in a stroller or a sling, a stylish diaper bag slung comfortably over her shoulder. We might exchange a smile, and for a minute I would taste what it might be like to be part of an unspoken community of new moms. But as soon as she caught a glimpse of Nathaniel, she would look away, trying not to stare. There it was, an instinct to be polite but also to shield herself from the horrible reality, the possibility that such things happen, that my life could have been hers. We lived in different worlds. I tried to steer myself away from the useless jealous thought that her life could have been mine, but during that first year, I often walked down the street pushing Nathaniel’s stroller and crying.
Some days were brighter, and Nathaniel and I would navigate our little world as if we’d chosen this adventure. We walked through Hoboken together, its tree-lined streets strung with cafes and shops. In the early evening, I would push the stroller through town to meet Russel’s train. It was a fifteen-minute walk, and as the stores I passed became familiar, I started to exchange hellos with the people who worked there. With the hood of the stroller down to protect Nathaniel from wind and sun, his face wasn’t exposed. I looked and felt like every other mom.
On the walk home from the train station the three of us would stop at the market for a piece of fresh fish or meat, and when we got home Russel and I would cook together, with music on the stereo and Nathaniel watching from his little chair. He was an easy baby that way, bless him, always content to watch and entertain himself, never fussing. Sometimes it seemed like he was grateful for every moment the doctors weren’t messing with his body.
Often, at 3:00 a.m., we would bundle him up, put him in the stroller, and walk the narrow streets of Hoboken. It was a couple of blocks through our neighborhood to the main street. On one of our first moonlight walks, we saw steam coming out the back door to a bakery. The light was on, a gold beacon in the still-dark morning.
A couple of young guys were carrying boxes from the basement into the bakery. They noticed us, waved, and one said, “What are you doing out here with a stroller in the middle of the night?”
We told them our baby couldn’t sleep. Indeed, Nathaniel was wide awake, happily taking it all in. They were friendly guys, and they insisted on giving us fresh-baked rolls. I tried to pay for them, but they wouldn’t let me.
Our hands were cold, and the rolls were straight out of the oven, almost too hot to hold. They smelled so good, the warm, comforting smell of home, we had to eat them on the spot. After that the bakery workers looked for us every night.
“Why weren’t you here yesterday?” they would ask if they hadn’t seen us.
“Oh, yesterday was a good night,” we’d tell them. Here and there, there were nights when we had a home-cooked meal, a glass of wine, an evening walk, and Nathaniel would sleep peacefully through the night without needing to be suctioned, but in winter those evenings were rare. No new parents love being awake in the middle of the night with a restless baby, but those rolls were so tasty they almost made it worth it.
7. Not Cut Out For This
As hard as Russel was working—he got two promotions during the first two years of Nathaniel’s life—money was immediately a problem. Most of the doctors at NYU didn’t take insurance. The bills poured in, many for each surgery: the anesthesiologist, the surgeons, the hospital stay, and so on. The total for a surgery might be anywhere from $5,000 to $60,000 if Nathaniel had three procedures in one fell swoop. Russel was constantly on the phone with insurance companies, negotiating for higher reimbursements. Fighting with the insurance companies was a full-time job. We wouldn’t have been able to afford the amount they didn’t cover, but an organization called the National Foundation for Facial Reconstruction (or NFFR, now called myFace) often paid the rest.
Somehow there were always more bills. $15,000 here. $10,000 there. The bills would come and we were expected to pay them out of pocket. Our credit took a hit as we waited for reimbursements from insurance and the NFFR to kick in. One day I was at the grocery store with a cart full of food, and when I went to pay, my debit card was denied. Our bank account was frozen.
I had to go home from the grocery store with no food. There’s always a soup to be made, I thought. When I was little, food was in short supply under the Communist government in Poland. My grandma often made a meal out of rice baked with apples, cinnamon, and sugar. That night, I cooked what I found in our apartment: It was rice and apples for dinner. We had to find ways to get by until Russel straightened out the credit card situation, but I knew if my grandmother could make it work, so would I.
The $1,500 rent in Hoboken was too much. We would have to move.
Russel’s brother Hal and his wife, Nancy, offered to build an apartment in their basement for us—this was the apartment that Russel had been helping to finish when I was attacked by killer cockroaches.
Hal and Nancy lived in Wading River, on the north fork of Long Island, in a two-story house. They’d generously finished the basement, dividing it into a living room, bedroom, kitchenette, and bathroom. Hal added wall-to-wall carpeting and finished the walls, doing his best to make it welcoming for us. We moved there when Nathaniel was around six months old.
Now Russel commuted two and a half hours each way to work: driving for an hour, then catching a train, then hopping on the subway. I stayed in the basement, slowly feeding Nathaniel for hours at a time, trying to keep the environment sterile. When Russel, Hal, and Nancy got home, I had dinner waiting for them. I love to cook, and it was the only way I could think of to try to thank them for putting us up. But if Nathaniel was sick, I couldn’t take my attention off him long enough to prepare a meal. Then I stayed down in the basement, keeping vigil to make sure he didn’t choke.
The first time Nathaniel’s trach fell out was in Hal and Nancy’s basement. He was about six months old, and I was accustomed to waking up every thirty minutes to check on him. His crib was right beside the bed. I’d reach over to feel the g-tube and the trach, sometimes without even opening my eyes. But on this night I woke up at 2:00 in the morning and his breathing sounded different. When I reached over, I felt the trach tube. It was supposed to be inside his neck, but it had been dislodged, and I didn’t know how long it had been that way. The doctors had told us that if this happened, we would only have fifteen minutes to get it back in place before the tissue would start to tighten and it would need to be surgically replaced. More critically, we didn’t know how long Nathaniel could survive breathing through his mouth.
We’d been taught how to replace the tube, but neither of us had ever actually done it. Cradling Nathaniel, Russel walked up the basement stairs, opened the door, and stepped into the living room. He looked up to the second floor and saw his brother Hal, the big brother he had looked up to his whole life, standing at the top of the stairs in his underwear, with bedhead. Hal took in the scene and said, “I just can’t do this. I can’t help.” Then he turned and went back i
nto his bedroom.
Russel put Nathaniel on the kitchen table. It was a long, wooden farmer’s table, and above it was an overhead light by which Russel could see. The trach tube had to go into the hole in Nathaniel’s neck (the stoma) at just the right angle.
Russel tried to wiggle it back into place, but the hole started bleeding. I hovered over my baby, fretting uselessly. Russel tried again and again. Nathaniel was getting agitated, and I started to freak out. Pacing, fretting, praying, I was a basket case.
Ungodly noises were coming from Nathaniel, a sound Russel now describes as a death gurgle, but at the time he said, “The bubbling means he’s breathing.” He was trying to reassure us both that our son wasn’t about to die.
I’m squeamish, and in a normal world putting a Band-Aid on a skinned knee would have been a challenge for me. I’d been making good progress with the daily care that Nathaniel required, but in a situation like this, I was utterly useless. Russel had been a lifeguard and a camp counselor, and knew CPR, though he’d never had to use it. This didn’t mean he was medically prepared for the prolonged emergency of caring for Nathaniel, not remotely—but temperamentally, he had what it took. He rose to the responsibility, calm and confident in the middle of a crisis.
He ordered me to call 911. Shaking in panic, I dialed the number. They said, “What is the address of the emergency?”
“911!” I screamed. “911!” Telling the operator the number I had just dialed instead of our address was not exactly helpful. This may be hard to believe, but I had never been a nervous person—I’d never had anything to be nervous about. That changed forever the day Nathaniel was born. Now that I couldn’t control what was happening, I was always nervous, and in emergencies I panicked and couldn’t think straight.
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