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... Continue Reading →

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... Continue Reading →

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... Continue Reading →

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... Continue Reading →

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... Continue Reading →

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... Continue Reading →

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... Continue Reading →

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... Continue Reading →

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... Continue Reading →