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Grief

#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 was pounding, my breath shallow and fast. “It’s ok,” I told myself. “It was a dream. He’s ok. He’s not…

Grief, Parenting

#21: The Littlest One 

One night recently, she cried out for me. She doesn’t do that much anymore, but earlier that night, when I’d tucked her in and softly sung, “You are my sunshine,” in her ear, she’d cried. “What’s wrong lovey?” I’d asked. “I just started thinking about a sad thing,” she’d said. “Oh?” I ‘d asked. “What are you thinking about?” And with tears thick in her voice she’d said, “I’m thinking about when you will die.”…

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?” “I’m OK,” she said slowly, before adding, “Worried about you.” We started walking. I told her it had been a…

ALS, Grief, Resilience

#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’ stomach, stitch around the opening in his skin, and, just like that, Chris will have a feeding tube. Next week…

Grief, Parenting

#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 has quieted, the ALS questions rise to the surface. I doubled back and sat on his bed, brushing the hair…

Grief, Sadness

#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 the dishwasher, tears pouring from my eyes, sobbing so hard I shook. He put his hand on my back. “Mom?…

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…

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…

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…