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ALS, Gratitude

#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 heartbreaking — photos of people who started the year with someone they love and are ending it without them. I…

ALS, Grief, Resilience

#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’ stomach, stitch around the opening in his skin, and, just like that, Chris will have a feeding tube. Next week…

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, Grief

#13: Listening 

I wake up sad lately. I open my eyes and the summer sun is pouring in the windows, and Chris is in the bed next to me. But for the first hour or so after waking, I can’t shake the feeling that something bad has just happened to me. I can’t find my way out from under the weight on my chest. It was the same in the weeks after Chris was first diagnosed. Sleeping…

ALS, Resilience

#11: A Post I Hoped I’d Never Write 

Dear friends, For so many months now I have updated you with two words that have meant everything to us — no change. Being able to say that for so long has truly been a dream. But today I’m coming to you with a different message. About a month ago I took a photo of Chris and our daughter when we were outside sledding, and I noticed his smile looked different. I mentioned this to…

ALS, Gratitude

#10: Life in the Bonus 

I didn’t know Colby Cave. I don’t know his wife or his parents or any of the people who love him. But when I sat down at my kitchen table this morning, opened Twitter and saw that he passed away after suffering a brain bleed earlier this week tears filled my eyes. At the other end of the table, Chris was doing a puzzle with our daughter. I told him. “No,” he said as he…

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, Grief

#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 fear. Now it comes in waves. Sometimes I can see it coming. Sometimes it hits me and suddenly I’m sobbing…

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

#2: At Christmas, Staying Present 

This Christmas I cried three times, and that felt like a pretty big win. The first time was when I opened a card from Chris. I cried because he wrote in it. I knew how much effort it took. He wrote in it left-handed, because he can no longer grip a pen with his right hand. He can’t do anything right-handed, which was his dominant hand until earlier this year when suddenly it got harder…