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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…

Grief, Illness, Sadness

#14: On Sadness 

The house is quiet and dark. The window is open, and the breeze is cool on my face. Summer is giving way to fall, and I pull the blanket up to my chin. These nights, when the air is crisp, have always been my favorite for sleeping. But this night my mind is restless, and it won’t quiet. Willa wakes up and wants to cuddle. I squeeze her tiny body, take off my sweatshirt and…

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…

Illness, Resilience

#12: One Year Ago 

One year. One year ago today we sat in that small, white room, and an EMG technician whose name and face I can’t remember told us he thought Chris had ALS. One year ago today I found out my husband was dying. One year ago today was the worst day of my life. I’ve often thought about what this day would feel like. Early on, before all the hope of the trial, I thought on…

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…

Illness, Self Care

#9: Stroke-iversary 

Two years ago today I had a stroke. I wanted to write something thoughtful about that experience, about all the trauma and tragedy and loss that has come our way in life and about how, even though I had a stroke at 34 years old and not even 18 months later my 37-year-old husband was diagnosed with ALS, we are doing our best to face it all with love and positivity. But eloquence is eluding…

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…