thefourthvine: A little girl with her arms outstretched. (Arms outstretched.)
Keep Hoping Machine Running ([personal profile] thefourthvine) wrote2016-07-23 09:52 pm

RL: Losing Gus



My father died of brain cancer a few years before the earthling was born. In fact, we bought the sperm that made the earthling using money my father left me; it was really important to me that that money pay for it. So my father, who loved babies, never got to meet his youngest daughter's baby, but he did at least have a part in that child's life. His death was awful and unfair and unacceptable, and nothing can change that, but we did manage to make something positive out of it. We made the earthling.

When the earthling was four, the mother of one of his preschool classmates died of metastatic brain cancer. The earthling came home the day after and said, "Mrs. Greyson said that Joycelyn's heart is sad because her mommy is gone, so we have to be kind to Joycelyn and help her with our hearts." (If you want to know why I could never be a preschool teacher: that was not the first time Mrs. Greyson had had to explain the death of a parent to a group of four year olds.) The earthling, being the earthling, had many questions. Where was Joycelyn's mommy? What happened to her? Was she really not ever coming back? What is cancer? How do you get it? How do you get better from it? Why didn't Joycelyn's mommy get better?

I answered all his questions, and then I spent some time crying in the bathroom.

This launched the hardest week of parenting I've had to date, as the earthling played out funeral after funeral with his trucks – one truck would get sick, and then it would die. The others would be very sad and there would be a funeral. And then a few minutes later we'd do it all again. Every truck he owned, and he had many, died at least a few times. And several times each day, he'd repeat all those questions about Joycelyn's mommy again. I cried a lot that week.

But I understood why he was doing it. He was trying to make it make sense, trying to adapt his worldview to encompass this weird, unacceptable truth: his classmate's parent was gone forever, taken away by a disease. That's not easy to do. I still don't entirely accept that my father is dead, and he died when his children were grown up, not in preschool.

The kids in Mrs. Greyson's class had an in-class birthday party for Joycelyn, because she turned five right after her mother died and her family wasn't feeling very much like having a party. And then a neighbor had another party for Joycelyn, and we all went to that. We celebrated what Joycelyn's mother left behind. We tried to help, to find some part of the tragedy that was still good. It's what you do when the unacceptable happens.

The unacceptable happened again this year. Last week, I explained to my eight year old that a kid a year younger than he is is going to die.

That kid's name is Gus. He's the son of my friend Sasha, who I met through a shared adoration of Mounties and the Chicago cops who love them, years before there was an earthling or a Gus. Gus loves documentaries and dinosaurs and playing outside. He wears sparkly pink nightgowns to bed. He has a brother one year younger who he shares his room, his life, his whole self with. And Gus is dying.

Gus was diagnosed with brain cancer at three. (I wrote this post for Sasha back then.) We talked about him a lot, the earthling and me, when Joycelyn's mother died. Back then, I could say, "Gus has lots of options. Gus is probably going to be fine."

That's not true anymore. Gus's cancer came back. It metastasized. He doesn't have any options left. He's feeling okay right now, but he's not going to be fine. Now, when the earthling asks about Gus, he climbs into my lap and says quietly, "There's not any chance at all that he will stay alive?"

And I have to say no.

My sister asked why I would even tell my kid something like this. But I had to. I'm sad for my friend and I'm sad for Gus, and my kid, who is around me all the time, of course noticed and wondered and asked why, and I'm not going to lie to him. I tell him the truth about the world, even when the truth is awful, because this is his world, this is the world we gave him: a world that has Legos and ice cream and children dying of brain cancer. I can't make it not so. I would if I could, believe me, but the best I can do is try to explain it.

But the reflex to protect my kid remains. When I have to tell the earthling something bad about the world, I also try to tell him how we can help. Something we can do to make things better.

There's not a lot we can do to make this better. This is the kind of bad we can't fix. Gus belongs in this world. He should be fixing this world right alongside the earthling, for decades to come. His awesome, irreplaceable self should be there in twenty and forty and sixty years, making things better, teaching new generations, loving his family, just living his life. But that won't happen. And, as the earthling would say, that is not fair. Not right.

So here's the only positive thing we can think of to do. The earthling and I are doing what Sasha asked and trying to raise money to help the next kids who get brain cancer like Gus. We made a jar to put change in, to send to the Tanner Seebaum Foundation, which helps fund research into Gus's kind of cancer. And I'm also asking you: if you can, if you have a little bit of your time or your money to give, could you give it in honor of Gus? Send this link to people, or visit it yourself, and donate. Or link people to this post.

Please help us make some small good out of the unimaginable.

Out of the loss of Gus.
kass: Eleven and Amy hug. (hug)

[personal profile] kass 2016-07-25 12:45 am (UTC)(link)
It is the unimaginable. I am so fucking devastated for Sasha and her family, I cannot even. And we're not *close*, we're not besties, I just know her and like her and also nobody should have to go through this -- no kid, no parent, just fucking nobody, ever.

One might imagine that because of my line of work I am capable of being sanguine about this. One would be wrong.