What I learned when I told my 5-year-old boys that I had cancer

The day I was diagnosed with cancer—serious cancer, out-of-the-blue cancer—I reeled out of the doctor’s office and onto the familiar street. My children’s dentist was on that block, and the Rite Aid where we got cheap toys after their checkups. Just an hour and a half earlier, I’d walked down that street and my world had been safe and whole—my two little boys, my good husband, my career as a writer just beginning to unfold. My life! I hadn’t even known to give it a backward glance.

In the car, I was gripped by two thoughts, both about my children, Patrick and Conor, who were about to turn 5. The first was that there was only one bright spot in this terror, but it was a big one: The cancer had struck me instead of them. At least the boys were safe.

But they were in a different kind of danger: that of losing their mother. I grew up in a household in which my mother’s grief over losing her own mother as a very young child was never expressed. She didn’t come from a generation that helped kids cope with trauma; she came from the generation that just carried on—and she had. But something in her never healed, and my sister and I felt it in a hundred ways. The page in Babar that described his mother’s death had been neatly torn out of the book; many fairy tales could not be read at all. Secrets were kept.

The lesson I learned about talking with children about sad things was this: Wrap everything in a happy story, no matter how implausible; protect them at all costs; lie.

Like many people, I thought that it was possible to control what children know by telling them only what you want them to understand. But children know everything. They may not accurately understand the facts, but they take in all the pieces of what is going on at home and make some meaning out of them.

From the minute I got back that first day, and friends and relatives started bringing them presents and whispering behind closed doors, the boys knew that something was up. As the next terrible week unfolded, and the week after that, my husband became more and more insistent that we tell them what was happening. He’d had his own childhood trauma; his parents had kept bad secrets. All his life, he’s believed in telling the truth, no matter the cost. But I still felt that telling our children this truth would mark the end of their childhood. So I developed a language for it. When I went to the hospital for surgery, I told them that the doctor had found a “bump,” and that he was going to take it out. I told them that I was going to take a special medicine and that it was a silly kind of medicine because it would make my hair fall out. They didn’t think that was silly.

Chemo began, and I made sure to always have a scarf or wig on when I was with them, but one morning I was lying in bed without one while my husband dressed for work. Patrick walked in wearing his pajamas, and he gave me a cool, appraising look, a look I’d never seen on him before.

“Who’s that?” he asked my husband.

Often, when I checked on the boys at night, they were sleeping together, for comfort. They started wetting the bed and coming into our room cold and crying. What could I do? I felt like all was lost, like this happy, regular family was crumbling in front of my eyes, and I couldn’t stop it.

But then an ordinary thing happened: Someone helped me. I’d wandered into the UCLA oncology center looking for its director. She wasn’t there, and I turned to leave, but the social worker on duty stopped me. “Don’t go,” she said kindly. “Come in and sit down.”

One of the main side effects of cancer treatment, which embarrasses me still, is that a lot of the time, I really want to sit down. But I wasn’t embarrassed in that office, so I sat, and she asked me what I was going through.

I told her about the boys, and she asked what they understood about my cancer. I told her about the bump and the special medicine. Gently but firmly, she said that I couldn’t do that. She told me that the next time they fell down and got a bump, they would think they’d become seriously sick. And when they had to take medicine, they would be afraid their hair would fall out. I thought about the bottle of bright-red children’s Tylenol with its special measuring spoon, and about the pink antibiotics they got for ear infections, and I realized she was right.

Instead, she said that I should tell them that I had a disease called cancer, that it was a very rare disease, and that they couldn’t catch it. And she said that I should tell them I was on chemotherapy.

It seemed obscene. Tell two 5-year-olds about chemotherapy?

She looked at a shelf filled with children’s books—the kind of children’s books you never, ever want to read to your children. She gave me one, and I drove home with it. I didn’t think this was the right thing to do, but what did I know?

I got home and I sat down with that terrible book, and the boys scrambled up on either side of me, the way they always did at story time, and I started to read.

From the very first page, I knew that the boys loved this book. They sat next to me, not moving, only breathing and looking. The mother in the book was already in treatment, and she was wearing a scarf like mine. The book explained cancer and chemotherapy and even radiation. When I finished, Patrick grabbed the book, opened the front door, and ran to the house next door to show it to the neighbors; then he ran back across the yard to the other side and showed it to those neighbors too.

I followed along with Conor, laughing and sort of explaining that the boys had this new book about cancer. All the adults on the street knew what was going on, and they immediately took time to look at it. When we got back inside, the boys wanted to read it again, and again.

I realized that they had desperately needed to know what was happening. They had been trying to understand and had picked up on the idea that they shouldn’t ask questions—or maybe they didn’t know what questions to ask. With that book, which we read night after night, they were no longer two children who had been shoved out of normal life. They weren’t experiencing something no other child ever had before. They were in the midst of something normal, something so unremarkable that a picture book had been written about it. The mom in the book loved her children, the way their mom loved them, and she wore a scarf because she didn’t have any hair, the same as their mom.

I don’t think they ever wet the bed again.

People often say that children are stronger than we assume. Sure, I believed that, but I never wanted my own children to have to prove it. I thought I had the power to protect them from hardship. No one has that. Children are no different from adults: Their lives are bound by events beyond their control, experiences that are contrary to the ones they want or the ones we wanted for them. But endurance is built into the human condition, and it’s as powerful in children as it is in adults.

Small children don’t need much when there’s a crisis at home. They need simple, accurate information about what’s happening, and they need to know who is going to take care of them as long as the crisis lasts. Your heart is breaking, but theirs might not be. They don’t know the script.

Many years ago, a little boy who lived on my street, an only child, lost his father. One October day, a couple of months after the death, I set out for a walk with my dog and saw some kind of cheerful production under way at the little boy’s house. His uncle—who lived a couple of hours away—had come over to create a giant Halloween display, with enormous spiders and webs, and the boy showed me everything. I could see how delighted he was. His home wasn’t just a place of mourning; it was a place where something fun and wonderful was happening. A few weeks later, the uncle came back with one of those little soccer nets, and I would see them kicking the ball around on Sunday mornings.

They were healing each other on that tiny front lawn—the man grieving his brother, the little boy mourning his father. I always felt like I might cry when I saw them out there, a little bit because of the sorrow of the father’s death, a little bit because of the sweetness of the uncle’s visits, and a little bit because I knew I was watching a scene that was probably very like what would have happened at my house if I had died when my boys were young. It would have been very sad, but soon enough they would have been stumbling forward into a new life, a life without me, but a good life nonetheless, filled with plenty of people who loved them. My job as their mother would have been to prepare them for that, and to let them know that even without me, everything was going to be okay.

I’m sure there’s a book for that, too, but I caught a lucky break, and we never had to read it.

Written by Caitlin Flanagan for The Atlantic ~ September 14, 2021