Tag: ALS Awareness

  • #25: Holding On

    #25: Holding On

    Early in the summer I dreamt my son was dying. My perfect, beautiful boy. I was helpless, aware even in my subconscious that this was too much. My own desperation jolted me awake. I opened my eyes and heard myself saying, “I cannot do this.” I blinked and looked around the dark room. My heart […]

  • #24: 40

    #24: 40

    Dear Chris, Today you are 40 years old. Two years ago I didn’t know if we’d make it to this day. If we did, I thought with certainty, life would look so different for us, full of wheelchairs and breathing machines and all sorts of medical devices keeping you alive. But here you are today, […]

  • #20: The Weight of Grief

    #20: The Weight of Grief

    Last week a friend rang my doorbell for a walk. I opened the door, greeted her and stepped out into the cold January morning, my eyes squinting into the bright sunshine and my breath suspended in the air before me. She asked how I was. I answered with a sigh, “Oh, OK. How are you?” […]

  • #19: Still Here

    #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 […]

  • #18: Falling Down, Rising Up

    #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’ […]

  • #17: Innocence

    #17: Innocence

    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 […]

  • #16: Broken

    #16: Broken

    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 […]

  • #15: Losses

    #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 […]

  • #14: On 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 […]

  • #13: Listening

    #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 […]