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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…

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…

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…

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…

Health, Illness

Aftershocks 

Most people reading this know that in March, at 34 years old, I had a stroke. On social media, most of our friends’ life events, whether happy or sad or scary or joyous, exist in a vacuum. We read about them. We comment on them. And then we mostly forget them. But of course social media is not real life and nothing happens in a vacuum. And when it comes to trauma, nothing gets tied…