I tried to protect my kids during this time and keep a close eye on their moods. If all this illness was getting to be too rough on them, I wanted to know.
Once I found a clue in the garbage. I noticed my daughter, on a rare spree to clean up her room after the end of seventh grade, had jumped to throw out a short story she’d written for English. She seemed to be hiding something, so I dug the crumpled paper out of the trash, rationalizing that anything was fair in the effort to discern whether she was in some kind of distress. The story was about “the sandwich guy” in the school cafeteria and how he understood her. I read it with trepidation.
“Maybe he sees me, for just half a second, sitting at my lunch table, and he notices something is bothering me, and no one around me really knows what it is…Maybe he knows that I wish this summer we could go to the Grand Canyon so that when this ends my stepdad, Joe, would have gone there. Maybe he knows why I sit through endless baseball games and just listen to Joe breathing next to me so in ten years I can remember. Maybe he knows why I’ll go sit with the guy when it’s just us in the house, just sit with him in the room and make sure he’s still there and won’t fade away like in the movies, and I can just hold on to his hair (which I hope doesn’t start to fall out soon because that’s what happens in the books, but please I hope it doesn’t because then I would just cry) and know that yes, he’s still here, even though he has a pump in his side, and we have to sit at dinner and wait for him while our food is getting cold so he can give himself shot after shot so that maybe he’ll get better.”
I had no idea Devon was trying to savor simple moments with her stepfather, and memorize him, just like me.
The next section about the “sandwich guy” recapped the night we were having dinner with Elliot’s mother, and somehow the subject of genetic counseling came up. I started jotting down some notes on Elliot’s relatives but Devon thought my handwriting was atrocious and grabbed the pen out of my hand to do it herself.
“Maybe he knows that I had to make a family tree (for the doctors) of every person in my stepdad’s family who had died of it, that I had to put how old they were and what type of cancer and when they died, and next to his name was just a blank, gaping hole just waiting to be filled, just staring at me like a kid with wide, expectant eyes who wants to know the answer, and I would yell ‘I don’t know!!! How should I know???’ But the ‘kid’ doesn’t look away, because really, I am the kid, and the question tinges all my thoughts like the brown on the roast beef, and it doesn’t go away.”
Damn. I had wondered if that genealogy conversation had been too morbid, but it got going before I could cut it off, and then Devon seemed to want to take charge of the family tree, and I thought maybe it would make her feel good to help. Hushing up the conversation might have been worse, might have suggested things were so dire that we couldn’t even discuss them. Who knows? How can a parent prepare for on-the-spot dilemmas like this?
On the outside the kids seemed fine. They went about their business, did their homework, saw friends and unloaded the dishwasher when prodded. Jonathan Alter, a Newsweek columnist who had lymphoma, wrote that his kids were protected by the “glorious narcissism of adolescence,” and I’d assumed my kids were a bit sheltered that way too. (Devon would later disabuse me of that notion. In her view, Alter was dead wrong. “Kids are a lot more aware than they’re given credit for,” she said. “People always underestimate them. It’s obvious what’s going on.”)
They were watching Elliot closely. They had come to depend on him. When Alex was little he used to dress up in costumes to meet Elliot at the train. He’d be Spiderman, Homer Simpson, a businessman or a clown. The kids loved how Elliot brought them Krispy Kreme donuts for good report cards and the way he moaned in mock exasperation at my chronically silly puns (“Look, there’s picture of a newt in the paper. It’s a newts-paper! You don’t like my puns? So give me pun-icillin!”) They knew he made me happy, and they were worried.
I did some more research into how to talk to children about cancer as the disease progressed. The experts said you should use simple, straightforward language. Kids need repeated reassurance that their needs will be met, they can’t catch cancer like a cold, and it’s not their fault. Even some teenagers blame themselves, assuming their yelling or rebellious behavior drove their parents to collapse.
Children have such keen antennae, experts advised against keeping secrets. Considering all the meds and symptoms and ER visits, I can’t even imagine how that would be logistically possible, but I’d met some parents who tried, like an Orthodox Jewish couple with five young children. Stage IV breast cancer had kept the mom in bed countless days over a year and a half, but she simply said “Mommy has a boo-boo” and God would take care of her.
Most experts agree that kids who aren’t told what’s going on can feel betrayed when the truth eventually comes out. One social worker told me that parents who think their children aren’t aware of a cancer diagnosis in the family should check what they’ve Googled lately. “Sure enough they find ‘leukemia’,” she said. “They are so surprised.”
Some kids feel guilty for resenting a sick relative. Some feel selfish if they have fun with friends during a crisis. Some get depressed watching a parent get weak. Private counseling and support groups give children a safe place to unburden themselves, but my kids wanted none of that.
Many children try to hide their fears from their families because they don’t want to add another burden to the pile. I guess that’s why Devon threw her short story in the trash.
She tried to keep a poem from me too. Her class had been studying Greek odes and she had to devise one of her own. I opened the school literary magazine one spring day and there it was.
ODE TO MY MOTHER’S HAIRBAND
Thank you, my strand of connection
The only thing holding
Chaos together.
Wisps of worry frame her face…
And I see her
About to fall off
But at least you hold some of her together
Keep some strings attached
So we can have her presence
Even if not whole.
Perhaps you are all-knowing
Wise enough
To bend and snap on others
But be gentle on her.
But please
Don’t betray
And break
We all need to pretend
To have some
Control.
What to say about such a poem? Devon saw us teetering on the edge of chaos? She saw “wisps of worry” around my face? I was moved by her empathy (“be gentle on her”) and admired her powers of observation, but I was upset to see she thought our family seemed about to fall apart. I was trying so hard to make our home feel warm and stable and safe. She wanted my “presence even if not whole.” She must have noticed how much of my attention was devoted to Elliot, but didn’t sound bitter about it. That was a comfort.
I tried to talk to Devon about the poem. No go.
“Oh Mom,” she groaned, rolling her eyes. “You weren’t supposed to see that. I didn’t give them permission to publish it.”
Alex was a little more forthcoming. His questions about Elliot’s cancer practically followed the script from the cancer books.
One night when I was stirring spaghetti sauce for dinner, about six months after Elliot got sick, Alex brought up the subject. We’d talked about a few of these issues before, but he seemed to want reassurance.
“Does Elliot have a mild kind of cancer or a serious one?” Alex asked.
“It’s a tough one, but he’s strong and determined and has very good doctors.”
“Is it like the kind of cancer in the lung cancer commercial that can kill you?”
“It can, but I certainly hope it won’t.”
“How do you get it?”
We’re not really sure, I explained, but sometimes it can be inherited, like blond hair.
“Can I get it then?”
“Well, we’re a family but you and Elliot aren’t related by blood.”
“So it’s not contagious?”
“No.”
It wasn’t easy to stay composed during conversations like this. Luckily, Alex’s next question, “Where is a pancreas, anyway?” led us to an anatomy book where far more interesting body parts brought some comic relief.
I was glad to know he felt comfortable asking these questions. He ended up writing about Elliot’s illness too.
“I think my family’s life would be much easier if this never happened,” Alex wrote in a fifth-grade essay. “He’s in a bad mood lots of times because of chemotherapy, so after chemo it’s really stressful.”
That’s for sure.
I didn’t talk that much about the whole cancer business with Max, who was busy in college, and Aaron, working in Chicago. They didn’t see the day-to-day ups and downs that my kids did. Kate, working in New York, had a clearer view because she came over a lot to have dinner or watch a ball game. She understood that visiting was the best medicine she could give.
All the kids wanted to do the right thing, and we didn’t have to prod one bit to get them all to join us for a weeklong vacation in the Outer Banks. Aaron had never come on a summer trip with us before. Elliot looked so happy strolling along the ocean beach, seeing his whole group together. His kids saw the bump of his port under his collarbone for the first time. Aaron called him “Cyborg” after a comic book hero who had superhuman strength thanks to his mechanical implants.
“If something happens to Elliot, will we still see the Pinsleys?” Devon asked me one day.
“I certainly hope so,” I replied. “They’re our family.”