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Childhood Cancer, Podcast

Evelyn’s Story: Heather Roy on Grief, Gratitude & Every Parent’s Worst Nightmare 

Meet Evelyn Faye Roy, a beautiful little girl from Calgary, Alberta, who loved music and dancing and art and books and Star Wars and her friends and family, whose light was blazingly bright and whose life on earth was heartbreakingly short.  Evelyn was 11 years old when she died of neuroblastoma in February 2020. This is a conversation about every parent’s worst nightmare, but it’s also so much more than that. It’s about finding a…

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…

Hope, Love

#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, at your favorite place in the world, driving the boat and diving off the dock, throwing footballs to the kids…

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, Gratitude

#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 heartbreaking — photos of people who started the year with someone they love and are ending it without them. I…

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?…

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…