The following essay is adapted with permission from “More Than We Expected: Five Years With a Remarkable Child” (Post Hill Press, 2023), James G. Robinson’s memoir about parenting a child with a complex heart condition and the lessons he and his family learned along the way.
The first day of kindergarten is an anxious and exciting day for any parent. But for us, parents of a medically complicated kid, it was even more nerve-wracking.
One of our three sons, Nadav, had been born with a congenital heart defect that required four surgeries before his fifth birthday. The last was unplanned, an emergency operation that lasted 14 hours and left us stranded in a country far away. It took nine months of recuperation in unfamiliar hospitals before he was strong enough to return home.
By then, Nadav had adapted to his new circumstances. He learned to write with his right hand, rather than his natural left. He’d gotten used to the extra oxygen he needed, delivered from a tank slung across the back of our stroller. And my wife was determined to not let anything stop him from having the same experiences as his brothers. In particular, she had made up her mind that Nadav would spend the fall like any other 5-year-old. He was going to go to kindergarten.
We’d lived across the street from a public elementary school for years. But we’d only visited it once, four years before, when we were trying to decide what school was best for our oldest son.
Crammed into a stifling hot cafeteria with dozens of other anxious parents, we’d been welcomed by a stern warning from a frazzled staffer. “The first thing you need to know,” she said, trying to project her voice off the ceiling and around the room, “is that there is no parking on the street.”
It wasn’t a great first impression, and we ended up sending Nadav’s two brothers to another public school a little farther away. But it was our zoned school, and when Nadav finally returned home after his nine-month medical odyssey, it became his.
Under federal law, school systems must provide any child with a disability with “a free appropriate public education.” But that didn’t mean that it would be easy. (“If they give you a hard time,” one hard-nosed mom warned us, “just threaten to sue ‘em.”) Bracing for the worst, we set up an IEP meeting with the school staff — the principal, assistant principal, psychologist, parent coordinator, two teachers, and a paraprofessional.
They sat around a cramped table, putting on airs of relaxed eagerness. But I suspected most of them were secretly terrified. To us, who’d seen him at his worst, Nadav looked fine. But I doubted that any of them had ever seen a child so ill, much less take responsibility for caring for one.
Pleasantries quickly turned into negotiations. Who would take him to the bathroom? How would he get upstairs? Unflinching advocates for our son, we parried policy with persistence; a stubborn strength that came from five years of bending the world to our will. He is going to go to this school, we said in as many words. And you are going to help make it happen.
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At one point, we reached an impasse. I can’t remember if it was about toileting, or his oxygen tank, or something else; it wasn’t going to work, and the dam was about to burst. And then his teacher, who hadn’t said a word to that point, leaned over, across the table, and met our eyes.
“Listen,” she said, “we’re human.” It was a statement of fact, but also a promise. To my ears, it was a commitment as firm as a wedding vow. I knew then that we needn’t worry. He was in the right place. They cared, and they would make sure everything would be OK. They were human.
Mary, his teacher, had a heart as large as the sun and all of the right instincts. “Let Nadav come on the second day,” she said. “That will give me time to introduce him to the kids, away from the first-day craziness.”
As it turned out, Nadav caught a cold and didn’t start until two weeks later. In the meantime, Mary helped the class understand what to expect. She explained that his heart didn’t work properly, but that otherwise he was like anyone else; she described his oxygen tank, his cannula, and his nasogastric tube; plainly, directly, honestly.
She put his name on the door, along with everyone else’s, written on a smiling green frog.
Mary knew the secret strength that children have — and that adults too often lack — a remarkable ability to look past the surface, without implications or inference, and see things for what they are. She understood that kids needed to know the truth; that fear came from not knowing.
Adults see an oxygen tube and think: this tube means that your lungs are in such bad shape that you can’t breathe properly. It means you’re in trouble; you might even die. That knowledge brings us fear.
But explain to a child that a tube gives you oxygen, and they’ll understand that’s what it’s for — helping you breathe. This knowledge that the tube serves a useful purpose is a source of comfort.
She was a wonderful teacher.
When Nadav recovered from his cold and was ready to start school, Tali and I took him across the street together. We parked his stroller in the yard (it was still difficult for him to walk long distances) and I saw an old friend with his wife. They’d just dropped off their kids too.
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“First day of school,” I beamed, an oxygen tank slung across my back. “Could you take a photo?”
Other kids streamed by, full of manic energy Nadav couldn’t match. While they skipped and bounded up the stairs, he took each step slowly, carefully, gripping the handrail with one hand, and mine in the other. When we eventually reached the classroom, it was marvelous to see him there — no longer a patient, but a normal kid on his first day of school.
We figured that given his lack of strength, Nadav might go to school a day a week, or perhaps a few hours a day. But that first day, with Tali at his side, he stayed until the bell rang, and at dinner, he was the happiest I’d seen him in a long time. “Do you want to go back tomorrow?” Tali asked, already knowing the answer. He went back the next day, and the day after, and the day after that; each day a quiet triumph.
Still, when he went to school, one of us would always stay home, just in case something came up.
Perhaps the most nervous person in the school was the nurse. She’d probably been looking forward to a boring year of skinned knees, and was suddenly responsible for a world-champion cardiac kid. She called us often, apologetic every time; just a little concerned; just keeping an eye out.
“Don’t worry, everything’s fine,” she’d say. “But could you just come over and check that his oxygen is working?” Or, “He’s looking a little tired, could you come take a look?”
I’d come to her office, and sit down, and ask Nadav to come over and tell me what was wrong. I knew that no matter how tired he was, if he could walk across the room, he was OK.
He’d walk over, every time. And I’d give him a big hug, and a kiss, and tell him to have a great day in school.
On the rare occasions when the nurse from our other son’s school called, we must have seemed like terrible parents. He had a headache? A scrape? A fever? Whatever. We had more important things to worry about.
Mary was right. Those looking after Nadav were “human” in the best sense of the word. His paraprofessional patiently fed him tiny scraps for lunch, singing songs to convince him to eat just another bite, just as we had when he had been in the hospital. His therapists were full of excited updates, high-fiving him as he left for home, his infectious charm contagious as always. One even built him a special chair out of reclaimed wood, so that he could sit with proper posture and not get too tired.
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Nadav had a hard time with stairs, so whenever the class visited the library on the second floor, we came by to help out. It was lovely to see him with his classmates. They’d bring him books, help him hold crayons, give him hugs. One curly-haired girl named Charlotte sat next to him every day and was especially sweet; we met her mother and thanked her profusely. But we both knew there was really nothing for us to thank her for. Her daughter was just being a friend.
One evening we went across the street for parent-teacher conferences. There wasn’t too much to discuss — we were already in daily contact with most of the people caring for him — but it was nice to meet some of the other people in his life.
I met the art teacher toward the end of the evening, just as he was packing up, and introduced myself as Nadav’s dad. He smiled, offering his hand. “Thank you for choosing to send him to public school,” he said.
Even though it hadn’t occurred to us to send him anywhere else, it was nice to hear. The school had learned what we already knew. Nadav wasn’t a burden; he was a gift.
Nadav died four months later – a sudden loss, but not entirely unexpected. We’d known for a while that he might not have long to live.
It is our tradition to give charity in memory of a loved one, and so that spring we decided to help fund a small memorial garden at the school. The therapist who’d built Nadav’s special chair made a little wooden planter, and we gathered on a lovely spring day to fill it with Nadav’s favorite herbs.
We still ached from his absence, but it was gratifying to see his teachers and classmates again — digging little holes in the dirt, dropping in assorted plants, patting down the soil on top.
Among my many swirling emotions, I couldn’t help but feel a strong sense of unfairness — for his classmates, those lovely, innocent souls, who had to be told about their friend’s death; and for the adults, who had to do the telling. I hoped that they would have the courage to be honest, to trust their children’s strength. But I also felt terrible that they were put in that position.
We couldn’t bear to attend the “graduation” ceremony at the end of the school year. But the other parents sent us a yearbook they’d put together. It had a special page just for Nadav, with quotes from his classmates about how much he meant to them. The last page was a group photo of all of us at the freshly planted garden. It made me feel better to know that they could handle our loss, too.
James G. Robinson has spent nearly two decades at The New York Times, where he helps the company use data to better understand its audience. He has taught expository writing at NYU and is currently an adjunct professor at Columbia Journalism School. A native New Yorker, he lives in Brooklyn with his wife, Tali, and their two surviving sons. His memoir, ”More Than We Expected,” was published last fall by Post Hill Press.