Karen had a pile of things to take to take with her, and Manya had her usual items—a sweater, a lunch bag, a small backpack—but it was the week our family was responsible for providing afternoon snacks for Manya’s second-grade class, so we had two plastic shopping bags that had to go to school. One contained four boxes of chocolate-chip granola bars; the other, fourteen recently halved bananas.
Karen, still exhausted, said she needed help getting everything to the car, and Manya began to load up. She poked her arms through the two straps of the backpack and positioned it, then she settled the strap of her lunch bag over her head and across her shoulder. As I reached for one of the shopping bags, Manya said, “No.”
Before Karen’s diagnosis, we would have considered ourselves lucky if Manya had carried her own stuff to the car, but now she had a strong need to help. “I want to do it all,” she said, and I let her.
As Manya struggled down the front walk, I thought, “Such a heavy burden for a child so young.” And I didn’t mean her various bags.
Later that day, I received an e-mail from my friend Hilary. She was asking how I was doing. “Mostly I’m OK,” I wrote back, “but this morning is particularly hard. I just want to cry and eat cinnamon rolls.”
“I always felt like I could just check out if the HIV or hepatitis got bad,” I told Hilary. “Now I don’t have that option, even if Karen recovers. The threat of a recurrence is always there, so I have to fight. I’m tired, Hilary. Life sucks, and I’m tired of having to rise to the occasion. I don’t want Manya to have to learn to be tough like I have done, but I know her, and that’s what she’ll do if it comes down to it. Sometimes I think I should fall apart just so she knows she has options.”
Hilary replied quickly. “If there ever was a time to fall apart, this would be it. Try it, you have friends nearby. Perhaps our children need to see the edifice of adulthood crumble. I wish I was there to give you a hug and feed you cinnamon rolls.”
She went on to ask, “What would breaking down look like for you?”
The truth is, I had no idea. I have never bounced a check, much less suffered a nervous collapse. In my twenties, my sense of responsibility troubled me so much that I once spent an entire morning teaching myself how to burn toast.
Manya had already shouldered the burden of character, and I was afraid that she was destined for a lifetime of trying to pull other people’s toast out of the fire.
I recognized this because I, too, have character. I say that humbly. It’s not something I’m proud of. It is just something that comes with growing up with a chronic health condition and not wanting to be a burden. I have come to see character as a weakness as well as a strength.
A few months later, Manya came home from school in a cranky mood. Normally a pleasant, compliant child, she was surly. She complained about everything, like the food I served for dinner. She threw a fit when I told her it was bedtime. In the morning, she was slow to get ready. And at one point she said she didn’t want to go to school. This from a child who always loved school.
Finally, I sat her down at the dining room table. “This kind of behavior is not like you,” I said, keeping my voice low so Karen wouldn’t hear us. “Can you tell me what is really going on?”
Manya looked at me for a moment, looked in the direction of the den where her mother was recuperating from the latest round of chemo, and then went into the kitchen to get a pen. When she came back, she started writing something on the corner of the newspaper. She kept her hand cupped around the pen so I couldn’t see what she was writing. Then she tore off the corner and handed it to me.
It read, “I want to die!”
I can’t tell you exactly what happened after that, because I can’t remember. I think I was in a state of shock. I do know that we both cried quietly. We talked a little in whispers. I tried to console her. And eventually we agreed she would go to school. I think just getting it out there made her feel better.
From what she told me, and what I was later able to get from talking to the teachers and other parents, I was able to piece together what had happened. The day before, the school had learned that the mother of one of the students had committed suicide, and the teachers had decided that this was an opportunity to talk to the kids about grief. In Manya’s class, kids had shared their stories about death. One of the kids had talked about two pet mice that had died of cancer, and this had prompted another student to talk about her grandfather. The school had known about Manya’s situation at home, but the teachers hadn’t made the connection. They hadn’t thought to call us and let us know what had taken place.
I took that torn-off corner of the newspaper and had it laminated the same day, and then I stuck it in my wallet. Every day at work for the next few months, at least once a day, I would close the door to my office, take the paper out of my wallet and stare at it. And I would cry for five or ten minutes at a time. It was a reminder to never take what Manya was going through for granted just because she seemed to be holding up on the outside. But after the first few weeks, I realized that my ritual was about more than just Manya. It was also about me. It was a chance for me to grieve over my own situation, to acknowledge that there were days I wanted to die.
Hilary was right: Sometimes it is a gift to our children to let them see the edifice of adulthood crumble. But Manya allowed me to see the edifice of childhood crumble. That was her gift to me.
NOTE: “Burning toast” was first performed on April 26, 2013 at Word Up! Santa Cruz.
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