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.
zee: (Default)

[personal profile] zee 2016-07-24 05:22 am (UTC)(link)
Oh, God, I'm so sorry -- for you, for Earthling, for Gus and for Sasha. My first little middle school boyfriend passed from brain cancer when we were 12. Cancer is so incredibly unfair. Love to all of you.
niqaeli: a pedestrian path lined by trees and shrouded in mist (misty forest)

[personal profile] niqaeli 2016-07-24 07:56 am (UTC)(link)
I had a comment written and accidentally closed it.

It doesn't really matter. This is hard. Death is always hard and somehow incomprehensible. Cancer is worse, because it so often steals people away long before we ever expected death to come for them.

If you happen to know the particular type of cancer -- it's not a comfort, per se, but I find it to be a distraction to chase down specific biology. It's my major, biology. And cancer is ultimately our native biology gone entropically, terribly wrong. So I always want to know, even if it fundamentally changes nothing.
out_there: B-Day Present '05 (Default)

[personal profile] out_there 2016-07-24 10:18 am (UTC)(link)
*hugs*
petra: A cartoon penguin standing in dandelions thinking, "Dandelion break." (Bloom County - Dandelion Break)

[personal profile] petra 2016-07-24 11:50 am (UTC)(link)
Thank you for setting up a way to make a light in the darkness. My thoughts are with Gus and his family, and with everyone whose life he's touched.
lomedet: voluptuous winged fairy with curly dark hair (Default)

[personal profile] lomedet 2016-07-24 02:05 pm (UTC)(link)
My heart aches for you and the earthling, and for Gus and his family and friends. Thank you for modeling how to parent through the unimaginable, and for finding a way to bring a little light into this darkness.
wild_irises: (koala)

[personal profile] wild_irises 2016-07-24 05:19 pm (UTC)(link)
Nothing is harder than this. I will send a donation, and I hope Gus has as good a death as he can, and that you, and the earthling, and Gus's family all have the time and the strength to heal well.
commodorified: a capital m, in fancy type, on a coloured background (Default)

[personal profile] commodorified 2016-07-24 06:22 pm (UTC)(link)
Oh hon. I remember when Jocelyn's mother died, how hard it was. I wish there was something I could say besides I'm so very sorry and I love you.
akamarykate: (Default)

[personal profile] akamarykate 2016-07-24 07:20 pm (UTC)(link)
Oh, this is so sad, and so hard, and you are doing the impossible with so much grace. Wishing light and peace for all of you, and I will send a donation.

(Pediatric brain cancer is a special cause here in Nebraska; the state has adopted Jack Hoffman and his family has launched a massive effort to fund research and solutions. It's appalling how far behind the curve research is right now for kids with various kinds of brain cancer. & I'm mkpleiss from twitter, where I saw this link yesterday, in case the connection isn't clear. *hugs*)
hypertwink: (hug)

[personal profile] hypertwink 2016-07-24 09:27 pm (UTC)(link)
Wishing love and hugs to all concerned.
soupytwist: a black and white picture of a nightlight on a nightstand (nightlight)

[personal profile] soupytwist 2016-07-24 09:46 pm (UTC)(link)
That is terrible and I am so sorry.

I hope the Earthling finds in your truthfulness the tools to try to make his own way through these hard things that the world throws at us.
littleheaven: (Default)

[personal profile] littleheaven 2016-07-24 09:56 pm (UTC)(link)
It's so hard, and I'm so sorry you have to go through this. As a parent who has had to explain to her kid that Daddy has died and he's not coming back, I know exactly what it's like. You desperately want not to tell them, and let them believe that there's nothing in the world that can hurt them, but you can't avoid these things. I think you're handling it exactly the right way.

At 4, the Earthling processed the news of his friend's mother a lot better than my son at the same age, who just looked at me after the big announcement and asked, "Can I have an ice-cream now?" because that was his routine thing to do after daycare. He had no real comprehension of what "Daddy died today" meant, even though we'd all tried to prepare him for it. And every now and then over the 5 years since it happened he'll come to a new level of understanding about it, and then he has to grieve all over again. All you can do is cuddle them and love them and help them deal with it. It really sucks.
devohoneybee: (where there is darkness)

[personal profile] devohoneybee 2016-07-24 11:04 pm (UTC)(link)
will do.
thank you for the good you do in the face of heartbreak.
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.
cadenzamuse: Cross-legged girl literally drawing the world around her into being (Default)

[personal profile] cadenzamuse 2016-07-25 01:54 am (UTC)(link)
That set of recs for Sasha got me into hockey RPF, back in 2012. I have wondered for a long time how Gus was doing, and I'm really sad to hear that the answer is "dying." I'm really grateful for your impulse to give the Earthling (and by extension, us) something good and productive to do in the midst of terrible things.

Hugs to you and to the Earthling and to Gus and to Sasha.
maidenjedi: (blue sky)

[personal profile] maidenjedi 2016-07-25 04:11 am (UTC)(link)
This is just awful.

I am not in a position to donate immediately, but I will, soon.
icedbatik: (Default)

[personal profile] icedbatik 2016-07-25 11:12 am (UTC)(link)
I'm so, so sorry. I am about to cry and I don't even know Gus. As a mother, I can be grateful I've never had to have that talk with my children. No child should have to suffer through cancer. (No one should, at any age.) And no child (no matter their age) should have to suffer through losing someone they love to cancer.

I hope Gus knows he has good people on his side. Sending you (and the earthling) virtual hugs, and visiting that link.
mtl: (Lanning: Sad Angel)

[personal profile] mtl 2016-07-25 12:42 pm (UTC)(link)
So very many hugs. I lost a dear friend to cancer over Christmas, my uncle is on his last legs (also cancer) and found out this weekend that a longtime favorite author in the mystery community, whom I've know for years was diagnosed with lymphoma and it's really bad. His wife died 3 years ago from cancer. I can't even begin to process cancer in a child.

Loads and loads of good thoughts to you all.

the_shoshanna: tealights and one tall candle, glowing in the dark (yule altar)

[personal profile] the_shoshanna 2016-07-28 04:15 pm (UTC)(link)
Oh, god, I'm so sorry. I can't imagine, but my helpless thoughts are with Gus, and his family, and also you and yours.
laurajv: Don't give me any wild ideas! (Default)

[personal profile] laurajv 2016-07-28 07:21 pm (UTC)(link)
fwiw at least one of the donate links is dead. The first link on the page goes to a no-longer-accepting-donations fundraiser. The more updated link from elsewhere on the site is:

https://www.firstgiving.com/Npo/386180/Donation?designId=93175