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The Snow family, December 2019

By Kelsie Snow

I used to tell stories for a living, but telling your own story is different. It’s scary and it’s hard and it exposes you. 

And that’s why it’s important. 

People aren’t good at grief, and that’s because we don’t share it. We hide it away and expect those living through it to do the same. 

My family is grieving. And we are also joyful. We are scared and we are hopeful. We laugh and then we cry. All of these emotions exist together. Sometimes they overlap. Sometimes we know we are doing it right. Sometimes we are barely holding on. 

This is our story. And here’s where I tell it. 

Here is where I try to find a way to explain what happens when you are 35 and a doctor tells you your husband is dying. How you feel your stomach heave and you grab a trash can in the tiny little room with not a single thing on the white walls, just a sad little desk where the EMG technician whose name you don’t even know sits and tells you your life, as you know it, is over. 

About how your husband once held up his phone with the calculator open and the number 16,425 on the screen. How, with tears in his beautiful blue eyes, he told you, “If you live until you’re 80, this is how many days you’ll be without me. Promise me you will LIVE.”

This is where I tell you, or at least I try, how that guts you. 

This is where I tell you that when a doctor says your husband has a year to live, you stop eating, you can’t be around your kids because you can’t stop crying, you jerk from sleep remembering that wakefulness is where the real nightmare lies, you start taking Ativan and you have rolling panic attacks. About how you can’t stop staring at your 8-year-old’s huge smile because you wonder if — when all this is over, when he’s lost his daddy — he will ever smile like that again? How you fill your Amazon cart with a safe and external hard drives and buy more iCloud space to be sure you never lose a single video or photo because you realize your 5-year-old will need them to stitch together her memories of her father. 

And this is where I tell you what happens when, after all that sadness and hopelessness has left you completely hollowed out, someone tells you that, actually, all hope is not lost.

What happens then — when you go from no hope to real, true hope — is you feel high. You feel everything. You feel like you’ll never stop appreciating every single breath you take. You feel like life is brand new. And you feel desperate — utterly desperate — to hold onto that hope, completely terrified of someone taking it away or diminishing it even a little. 

Because hope, it turns out, is everything. 

And maybe that seems like an obvious thing to say, but I would wager that until you have been truly without hope, you can’t really understand it. 

Hope is everything. 

Here is where I tell you that we were hopeless but not anymore. Here’s where I tell you that Chris has a chance. That he has ALS and he has a chance, and isn’t that sentence a miracle already?

Here’s where I tell you that we believe he’s sticking around. 

Here is where I tell our story. 

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To learn more about our story, go here: https://www.nhl.com/flames/news/dear-hockey-family/c-312763286

To donate to ALS research in Chris’ name, follow this link: http://uom.convio.net/goto/chrissnow