Tag: EndALS
-
#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,…
-
#21: The Littlest One
One night recently, she cried out for me. She doesn’t do that much anymore, but earlier that night, when I’d tucked her in and softly sung, “You are my sunshine,” in her ear, she’d cried. “What’s wrong lovey?” I’d asked. “I just started thinking about a sad thing,” she’d said. “Oh?” I ‘d asked. “What…
-
#20: The Weight of Grief
Last week a friend rang my doorbell for a walk. I opened the door, greeted her and stepped out into the cold January morning, my eyes squinting into the bright sunshine and my breath suspended in the air before me. She asked how I was. I answered with a sigh, “Oh, OK. How are you?”…
-
#19: Still Here
The past few days, friends on social media started posting the first photo they took in 2020 and the last. Some were heartwarming — the friend whose first photo was of her pregnant belly, the last of her adorable baby boy. Others were silly, a play on the stresses of a hard year, and some…
-
#18: Falling Down, Rising Up
Next week a surgeon will cut into my husband’s abdomen. He’ll put a tube down Chris’ nose and blow up his stomach like a balloon, and then he will slice through it and stick a tube from the outside in, blow up another little balloon in that tube so it doesn’t come out of Chris’…
-
#17: Innocence
My son is settling into the sadness. Last night I tucked him into bed, kissed him on the forehead and went to do the same for his sister. “Mom? I have one question, about ALS.” This is our new bedtime routine. After his energetic body has calmed down and the busyness of his 9-year-old mind…
-
#16: Broken
I broke a glass yesterday, and I shattered right along with it. It was a glass we got on a family vacation to San Diego a few summers ago. It was the best trip we’ve ever taken, before ALS, when life was so much lighter. My son saw me crouched down on the floor by…
-
#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…
-
#5
Chris is doing really well, the last few months especially. He feels positive and grateful. He smiles and laughs easily. As the entire country could see during Hockey Night in Canada After Hours, he is inspiring. And when he feels positive I do, too. Mostly. Early on I was drowning in grief and sadness and…
-
#5: A Rogue Wave
Chris is doing really well, the last few months especially. He feels positive and grateful. He smiles and laughs easily. As the entire country could see during Hockey Night in Canada After Hours, he is inspiring. And when he feels positive I do, too. Mostly. Early on I was drowning in grief and sadness and…
Kelsie Snow 