Photo:
Caroline with Theodore (l), Henry (r) and puppy Nessie
The day I realized that I would be the source of the disaster that altered my children’s lives forever, I felt paralyzed. In my prior years as a parent, spanning my oldest son’s infancy and toddlerhood, I had taken all reasonable measures to protect him from the aspects of humanity that were too terrifying, too nuanced or too mature for a mind and heart so new to this world to understand.
My sons were only 1 and 4 when I was diagnosed with terminal brain cancer and given a year to live. My younger son had yet to speak his first words, had only begun to understand that I was a separate being from him. I feared my older son, whose fluidity with language and expressing his emotions hinted at his desire to know everything at once, would know too much too fast. I felt as though I’d detonated a bomb within our home, reducing all that any of us had known together to rubble. What’s worse is that I was not only responsible for setting off the explosion, but had unwittingly created the weapon inside my own body.
Worse still: I was their most trusted source for comfort, for repair, and I had no way to know if I’d survive long enough to convince them that they would survive, too.
Parenting in the face of an insecurity so elemental as survival required me to live a contradictory life of acting without judgment or fear of the future while nurturing the sources within and outside of myself that believed in my healing. (This idea alone requires a distinction between the confused ideas of healing and curing — one which I understood I control and the other which I could not, based on what I was being told by my doctors.)
This kind of parenting took the form of open, clear conversations, during which I couldn’t pretend to know what I couldn’t possibly know and I couldn’t attempt to shield my sons from sadness; both approaches formerly had been foundations of my parenting instincts. These conversations were led by my older son alone, their trails defined only by his questions. I mothered from a place in which my own personhood had become a kind of abstraction through my diagnosis and treatment, during which my body and emotions operated independently of one another. I lived in this blurry, surreal space for a year.
And then … nothing happened. I survived. All that imagining, the protection, projection and scaffolding for a future that never came. It felt surreal, too, at first, hard to trust. (If I’m honest, it still does sometimes.) Reassimilation into “normal” life felt impossible somehow, because I no longer defined my happiness and fulfillment by the same forces I did before my diagnosis. I had changed completely.
So, I just kept doing what I had been doing: having honest conversations with our oldest son. His resilience, his joy, begged my company. Instead of devoting my days to the search for hope as I’d done during my treatment, I devoted myself to searching for gratitude. I found it in small, everyday moments with my family. I found it in writing my story, in advocating for fellow cancer patients whose outcomes weren’t as lucky as mine. I found it in returning the favor of showing up for strangers the way strangers had shown up for me.
When the coronavirus pandemic swept through our city, I had already begun making soup for the many friends who had left soup for me on my doorstep during my cancer treatment. It was my ritualized gratitude practice, grounding me and my family in my story of survival and joyful health.
As everyone I knew isolated themselves around the world, I recognized a generalized manifestation of themes I’d grappled with during my cancer: isolation, fear of the unknown, the shocking reckoning with mortality and loss. I felt a parallel grief along with the families I saw on the news, and eventually, people I knew personally. While navigating trauma involving health made me feel especially connected to those suffering the devastation of the pandemic, I also understood that each story is a unique journey for those involved. There aren’t shortcuts to healing — I knew this well — and the sources for it are personal.
My wellspring source, which is living in real gratitude — not the kind stitched onto pillows or posted as memes on social media — is gritty and messy. It has required me to look at the very things that scared me most about my cancer experience, to turn them over and over in my hands until they are smooth and provide a kind of comfort of their own. After all, the person I once was is gone; the best I can do now is love the person I’ve become.
Being a parent who once detonated devastation upon my family, who then also survived to reassemble the pieces, means that I will likely always parent from the space I did when I was diagnosed: being open to random, difficult conversations when they arise and following the lead of my children’s questioning.
It doesn’t feel shocking anymore, this brand of vulnerability. It feels like being alive.
Editor's note: This article was first published in 2022 and has been updated for 2023.
