"What Happens if Daddy Dies?" Parenting through Glioblastoma

"What Happens if Daddy Dies?" Parenting through Glioblastoma
Celebrating Daddy's birthday on Monday

I just happened to be walking past while my mother was putting the kids to bed. I’ve been doing that a lot, happening to be places where people are doing things that are really my job, because there are so many people who are here to help, and I am letting them. But I popped into the girls’ room to say goodnight, and my youngest squeezed her giant Squishmallow and told me, “Grandmommy said she’d tuck us in for Daddy every night.”

I paused. “You mean, while Daddy’s in the hospital?”

“Yes,” she said, and her sisters seemed to freeze where they were lying, as though a million thoughts had paralyzed them on the spot. I took a breath and sat down.

“Are there any questions you guys want to ask?”

“Yes,” my youngest said again, and then looking up at me with her blue eyes so, so wide, she said in a whisper, “What happens if Daddy dies?”

“He’s not going to die from the surgery,” I whispered back, and stroked her cheek. “His doctors aren’t worried about him dying in the surgery at all.”

“But–” Her older sister leaned over from the top bunk, and I craned my neck to look up at her. “But why don’t they care enough about Daddy to worry?”

“Oh, they care about Daddy SO much!” I said, but the floodgates were open.

I answered their questions. Every question. As honestly as I could. I told them what parts of their father’s brain were being cut into, how long it would take, whether or not it would hurt. They all had fears. So many fears.

Soon, I was sitting on a giant teddy bear on the floor, all three of them crammed into my lap, stroking hair and rubbing shoulders and patting bellies as they cried and whimpered and sniffled and asked and asked and asked and asked.

“Will he know who we are?”
“Will it hurt?”
“Will he look different?”
“Will he remember things?”
“What if they cut into the wrong part of his brain by mistake and he forgets us?”
“What if there’s a mistake?”
“What if he needs to pee during surgery?”
“What if he gets sick?”
“When will we go back to being normal?”

He will always know who you are, but he will probably be confused. They’ll give him medicine that will make him sleepy and confused.
It will hurt, but that’s why they’re giving him the medicine.
He’ll look a little different right after surgery, but that won’t last very long.
He will remember everything just fine.
They won’t cut into the wrong part of his brain, that’s what all that brain mapping was when Daddy was in the hospital two days ago.
There is a different doctor for every single job, and to make sure that every doctor does their job just right. There won’t be any mistakes.
They’re going to stick a tube up his urethra into his bladder so his pee goes into a bag. If he needs to pee, it will just go into the bag.
He will get sick. There’s a special drug they’re giving him, he’s only the fourth person they’ve given it to, and it’s going to make him sick. It’s going to trick his body into thinking the tumors are a disease they know how to kill easily. It’s going to trick the tumors into killing themselves. But yes, it will make him sick.
…I don’t know.

I have no idea when we’re going back to being normal. I somehow doubt we ever were. I didn’t tell them that after his first surgery, after his first round of treatments and the success of his first trial, we decided that it was better to have children right away because the longer they had with their father, the better. That if he had to die when they were young, it was better to do it when they were old enough to understand what was happening, to know him and remember him and love him. I don’t know how to tell them that part of the reason they are is that we were planning around his mortality. That isn’t how families are usually made.

But they still sense it, a little. They wanted to talk about my late grandmother. My littlest said, her face open with conflicting emotion, that she doesn’t remember my grandmother. Behind her eyes lurked the fear that her father will die, and she will forget him, as well.

I don’t think either of those things will happen. But I also don’t want to lie. I can’t tell them he won’t die, because he will. We all will. We will all die. And that is terrifying.

Not the fact of our own mortality. That’s easier to grapple with, for me and Mike, anyway. But the idea of having to continue on, without. Without somebody so critically important to you, you cannot imagine a day without the awareness of their living presence in your life. The fact of their faults, the fact of their foibles, the promise that you will be able to find them and they will be themselves, and who they are to you.

That is terrifying.

And as a child, learning to fear death, you cannot help but see it in so many places. In every person. Every person you love will die. Every person will die. Everything must end.

“I’m scared,” they said, both directly and by insinuation, and I told them, “I know.”

As we get closer and closer to surgery, the fear is ramping up. The anxiety the children carry with them to and from school is palpable.

I can sit on a teddy bear on the floor for an hour and a half, stroking their hair and rubbing their backs. I can tell them the grisly and gruesome details, and also tell them the funny ones, and also tell them it’s okay to be scared, and also tell them that I am going to take care of Daddy, but it doesn’t mean I am not also going to take care of them. I can take care of them. I can watch over them and answer their questions and kiss their foreheads and dry their tears.

I can do it all so calmly you’d think we do this every day.

Because maybe I do. Maybe I have done this every day, every minute for the last twelve years and change.

Or maybe when it’s time to be comforting and calm, to be present and practical, maybe that is where I shine.

I told them it’s okay to be scared, and that I’m scared, too. But that’s because our fear is telling us how much we love Daddy, how much we love our family, and how much we don’t want it to change. And when we understand it, when we understand how hard it can be to love somebody so much, we can thank our fear for teaching us how important Daddy is, and then we can set it aside.

I didn’t tell them I’m still working on that. I am still working on that.

“But Daddy is going to be just fine,” I say.

“Daddy is going to be home before you know it.”



Read more about talking to kids about glioblastoma here: Yes, Daddy has Cancer in his Brain, Now Eat Your Dinner

Read my most recent post here: The Nightmares That Don’t End

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