Friends,
November began with my son Riley’s favorite holiday, Dia De Los Muertos. They used to celebrate it at his school and he loved bringing in photos of his grandfathers who he had never met, sharing what he knew about their lives. He loved smelling the sugar skulls and didn’t mind that he couldn’t eat them.
After he died, I realized that sugar skulls have a space on the forehead for a name, and I wondered if Riley's affinity for the holiday came from an awareness of death due to his condition and the looming possibility that he could die from it.
I want to share an excerpt from my essay, “See the Beauty,” which is about the time period between Riley’s diagnosis and his death.
Riley’s first bleed, and his fatal last one, act as bookends for a fleeting sixteen months when I lived with the knowledge and fear that his inoperable brain AVM could bleed at any time, and there was nothing we could do to prevent it. It has now been eight years since he died at age six, and his younger brother, Desmond, has aged past him. The time encapsulated between the bleeds is compressed like a dusty book on a shelf between others, a relic of my past life in a library I haven’t entered in ages.
When I return to that time between Riley’s bleeds, it’s like I’m looking into a time capsule. I reflect on the woman I was, the one who endured the aftermath of that diagnosis and the one who wrote the essay years later. I am in awe of her. She was so brave. People told her she was, but she didn’t like it or get it. She thought Riley was the brave one, and she was just his mother. After what he went through, the pain, the suffering, the blood draws, MRI’s, how could she be the brave one?
Now, I feel that fierce bravery for her and integrate it like muscle. She excavated a time that felt impossible to write about after Riley died and found beauty in words. She moved through her trauma and grief. I remember her reading that essay in a writing workshop, the trauma shuddering through her body like an onslaught of aftershocks, but she kept on going. She inspires me to write these words now and to continue mining connections between the loss of my son and the gifts that came with it.
I think back to the newfound awareness of death I gained during that time. The knowing that Riley had something he could die from and there was nothing we could do to prevent it enabled me to realize how much time and energy I had wasted worrying about the possibility of death. I didn’t want to be a hypochondriac and ruminate the way I did about my health and the possibility of death, but no matter how hard I tried to stop, it seemed like an impossibility.
His diagnosis led to my epiphany that anyone, including myself, could die at any moment from an unknown condition or accident, and we just knew what he could die from. After that, it felt wasteful to use energy worrying about unknown conditions and potential death causes when my son and other people had known conditions. It took living with that palpable fear and knowledge for me to change and relinquish my hypochondriac tendencies. This change has been a lasting transformation for me.
I realize now that during that time I was learning how to live with the awareness of death—practice for what was to come. When someone we love dies, we gain a deeper cognizance of life and death. This can create anxiety and fear, but beyond that, it also gifts us a new appreciation for life. In grief, simple moments and images in nature may appear more stunning, as if looking through rose-colored glasses or the focused lens of a camera. We may have a heightened appreciation for our relationships and discover new meaning and purpose. How we want to spend our time, and with who, rises to the surface.
This essay excerpt is at the end of Riley’s hospital stay after that first bleed, as we waited for his release papers:
...he sat, arms wrapped around hospital-gowned legs, the sun lighting his hair, creating a haloed effect, as he looked out the window at the clear sky, glistening buildings, the rainbow of pedestrians striding the sidewalks. “Look at the beauty,” he said.
“I see it,” I told him.
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November Journal Prompts
#1 Is there a moment you remember from a loss that has stayed with you like the one I have of Riley in the hospital? Write about what you saw, felt, heard, smelled, and tasted in that moment. How has it had a lasting impact on you?
#2 Did you develop anxiety and/or fear around new things after a loss? Or did it quell old ones? Write about your fears before and after the loss.
#3 Do you see the beauty more after your loss? Write about moments you have witnessed beauty. This could be as simple as a time you saw something beautiful in nature like a butterfly flutter by. If you can’t think of any after the loss, write about the lack of beauty and darkness you see since the loss. Does it seem like everything is muted or shadowed?
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On Child Loss, Grief, and Healing (Channeling Grief Interview)
Elizabeth Kopple of Channeling Grief published this Substack that features an interview with me as well as some of my poetry.
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Warmly,
Chanel
P.S. The wait list for my small group Writing through Grief program is open.
