100 Ways to Die, or, Kids and Glioblastoma in the Age of Coronavirus

100 Ways to Die, or, Kids and Glioblastoma in the Age of Coronavirus

When the twins were babies, there was a tornado outbreak across Illinois, Iowa, and Indiana. For weeks the local news cycled back to it, and I remember vividly a story about the children of demolished towns playing “tornado” with their toys, making sense of a world full of chaos and destruction by turning it into a game.

It reminded me of “Kindred,” by Octavia Butler, in which enslaved children on a Southern plantation played “Slave Auction,” selling each other off to laughter and cheers.

Children play at what terrifies them. It’s something we have to learn to grow out of. We learn not to climb too high, we learn not to enjoy roller coasters, we “grow out” of gore-core horror films. We lean into these things to confront the confusion and terror of living in this unpredictable world, and then as we inure ourselves to those horrors, we are able to move on.

Ten days ago, Mike and I sat down with the kids and told them the news we had spent a day and a half coming to terms with hearing ourselves. Mike was failing treatment. He was going off chemo. We were preparing end-of-life initiatives. It was over.

As it turned out, this was incorrect information. Mike was responding well to chemo. There was no sign of a brain infection. Whatever was causing his sudden-onset 104-degree fevers resolved. We canceled our plans to fill out the pre-death paperwork. Things were looking up.

But those four days that the kids knew Mike was DYING, in an immediate and meaningful way, those hurt. When Mike’s fever spiked and sudden pain in his shunt made it appear that he had an infection in his brain, I told the children to say goodbye to Daddy and tell him they loved him, because I didn’t know what would happen and he might not come home. I said that because it was true, and because if I were ten years old and missed my last chance to say “I love you” to my father, I don’t know that I would ever get over it.

And he was fine. And he came home.

Processing this inundation of events and news and twists and turns has been hard, for us, the adults. But on the surface, the children look pretty good. They’re getting along better than ever. They’re behaving themselves. They’re mostly agreeable.

Not long ago I walked in on them all playing together perfectly, their dolls ranged around them, in various states of redress. I smiled and beamed at the three of them, my perfect angels.

“What are you playing?” I asked, so naive, so oblivious.

They grinned and laughed. “We’re playing 100 ways to die!”

Already one kid spends her mealtimes ruminating on how many children you could drown in a well before it poisoned the village. One kid waits until the end of the day and it’s just her and me for a minute to ask, “If we’re all going to die, what is even the point of living?” And the youngest, she likes to be near me, doing nothing together, and then she’ll simply say, “Remember when you said Daddy might not come home?” before changing the topic of conversation. She doesn’t want to talk about it. She just wants me to know she heard, and she understood, and she was afraid.

I know what it is to be that age and dealing with the horrors of the world through play. I remember it myself, twisted Barbie games full of murder and rape and abduction. I remember the fascination I had with YA horror novels, then with Stephen King. I remember all of it.

I know this is normal for abnormal times. I know the world is full of death, is always full of death. But right now the world is full of so much more, so much closer.

100 ways to die include COVID-19, glioblastoma, strokes and seizures, brain infections, police brutality, nationalist terrorists, tornadoes.

It has not escaped me that, after two brain surgeries during which the children feared for their father’s life, when he came home their aunt died out of the blue. It has not escaped me that not long before their father’s last two brain surgeries, their great-grandmother died. That in February, one of my dearest friends died. That they watched me and their Uncle Phil mourn somebody our own age and then they watched their father disappear into a hospital for a month.

And now they know that when somebody goes to a hospital, they might not come back.

I am trying, every day, to be the mother they need. But they need so much more. They need to find their way to accepting the world as it is. A world full of pain, and loss, and tragedy. And if they reach adolescence with a black sense of humor and a goth streak a mile wide, so be it. I will not lie to them and tell them the world is always fair, or kind, or even good.

But when they ask me, “How many babies do you think you can fit down the well?” I tell them, “Even one baby in the well and everybody will come to help rescue them.” When they say, “What is the point of living?” I say, “I don’t really know, but I will tell you we can always make the world a little better for other people, and that is enough of a point for me.” When they say, “Do you remember when you said Daddy might not come home from the hospital?” I respond, “I do, honey, and I was scared too, and even if you never want to talk about it I’m here and I’m ready, and I love you, and I’m so sorry the world is so unfair. You are good and kind and sweet and you deserve a fair world, a kind world, and I am working every day to give it to you.”

And when the sky turns green and wall clouds block out the sun, when the tornado sirens sound and I scurry the children to the basement, I know they will play Tornado with laughter on their lips despite whatever darkness is in their eyes, and I will be there for them then, too.

Someday, when they need me to join in, I will wear the same smile on my lips and the same darkness in my eyes, and I will sit with them, and play 100 ways to die.

 


 

You can read more parenting through a life-or-death crisis here: “What Happens if Daddy Dies?” Parenting through Glioblastoma

Read my most recent post here: Our 13th Glioblastoma Cancerversary

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