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Illness, Love

#8: When You Aren’t With Me 

This last month has been a lot. A lot of traveling, organizing care for the kids, asking for help (which doesn’t seem to get easier). A lot of emotional energy. In four weeks we’ve flown to and from Toronto three times. I am beyond grateful. I’m also tired. On top of the increased trips to Toronto, Chris didn’t come home with me after our last one. He flew from Toronto to Boston because management goes…

Illness, Marriage

#7: Love 

Yesterday you told me you are having trouble getting into the book you’re reading. I told you I’m having trouble getting into my own head. It’s not a comfortable place to be most of the time, so lately I’ve been filling it with distractions and busy-ness and anything other than the thoughts constantly streaming through my very tired brain. I watch Netflix. I check Twitter. I listen to podcasts. I thumb through Instagram stories. Sometimes…

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…

Family, Gratitude, Grief

#3: 525,600 Minutes 

My social media feeds are full of people wishing farewell to 2019. So many of the people I know found the last year hard, and I’m no different — 2019 was certainly the hardest year of my life so far. I definitely used to be one to say good riddance to a year that seemed filled with more heartache than joy. But I’m not here for that anymore. Because no matter how hard the last…

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…

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…

Gratitude, Illness

To love my body, it had to fail me. 

This week I was skating with my family, racing my 4-year-old up and down the rink as she giggled and squealed. I watched her wobble and right herself and push forward to win. I followed behind her, skating the length of the ice on one foot going one direction, the other coming back. I’m not a great skater, but I did it with ease, and in that moment I was struck by such a deep…

Family, Grief, Joy

Joy and Grief 

I haven’t known what to write in a long time. I’ve started things and stopped, saved drafts and deleted them. I thought I was stuck. I now realize I was overwhelmed. This year has been hard. For me, for my family, for so many of my friends. All around me, there’s been sadness — death and divorce, illness and pain, strokes and cancer. Horrible things happening to good people. Just a few months after my…