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Hope, Love

#24: 40 

Dear Chris, Today you are 40 years old. Two years ago I didn’t know if we’d make it to this day. If we did, I thought with certainty, life would look so different for us, full of wheelchairs and breathing machines and all sorts of medical devices keeping you alive. But here you are today, at your favorite place in the world, driving the boat and diving off the dock, throwing footballs to the kids…

ALS, Hope, Illness

#15: Losses 

The air this week is cold, and every small bluster of wind sends the few leaves still clinging to their branches cascading to the ground. Two days ago the kids and I walked to school through the field behind our house over a blanket of snow covering the still-green grass, and now when I wake up in the morning the sky is still dark. Winter is coming, and I should be grateful. Every change of…

ALS, Hope, Joy

#6: L-I-V-I-N 

📷: @VartyCamera Eight months ago I sat next to Chris on a plane and watched him sleep. I studied his face and his eyelashes, I held his hand and looped my arm around his. I touched his thick, black hair. I cried. I thought about how I would never get to see his black hair turn grey, how I wouldn’t know how handsome he’d be as the years went by. How I wouldn’t get to…

ALS, Gratitude, Hope

#4: Living the Dream 

I remember being in the car, coming here for the first time in June last year. We were waiting to turn left into the hospital entrance and I saw the billboard: “Where Impossible Becomes I’m Possible.” I pointed it out to Chris. He squeezed my hand. All our hope was here, and we were both scared and hopeful as hell. That was almost seven months ago. The photo on the left was that day. The…

ALS, Family, Hope

#1: Our Story 

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…