Mom Talk: A Dying Mother’s Words For Her Sons
Written by Caroline Wright
Photography by Image courtesy of Caroline Wright
What words are there for a mother of two young children who is told she most likely only has one year to live? For the immensely talented writer Caroline Wright, words turned into her lifeline, as she sought to examine her experience and leave a legacy of love for her two young boys by writing her way through her terminal brain cancer diagnosis and treatment. In today’s Mom Talk, Caroline shares some of those words—reflections from the moment she received her test results up through today, more than two years later and defying the odds she was given for survival. Formerly a successful cookbook author, Caroline has since authored a children’s book, Lasting Love (published by Rodale Kids from Random House) that seeks to help explain death, loss, and unending love to children—specifically, to her own. Read her transformative words below.
I always wanted to be a mom, to take the kinds of love that made me who I am, keep the best parts, and put that out into the world. Since the birth of my first son now almost seven years ago, I’ve felt that being a mother, a good one, is something sacred. It is an honor, a new relationship seeded from my own skin, something of myself that is both reborn and independent all at once. It is overwhelming, daily, messy, and hard. As time between mother and child is fixed between bodies at birth, within the very nature of motherhood exists a reminder of mortality. My introduction to motherhood began like so many others: full of the assumption of years and milestones ahead, pregnant with the sense of handing off lessons like a baton in a lifelong relay race; ever so sweetly naïve. I had no idea of how precious and powerful each day could seem when mortality went from a distant abstraction to an urgent reality.
I received the call from my internist while she was out on a camping excursion over the holiday weekend, desperate to relay the radiologist’s report from my MRI that morning. I don’t remember her words exactly and I struggled to understand them—the reception was choppy, and my absorption of her fear shot like tremors through my body. The boys were swirling around my knees, wondering why Mommy was crying and why Daddy shuffled them to bed early. The morning after, silence filled our normally bustling home as we all woke up to a new life. When our precocious then four-year-old son, Henry, joined us at the breakfast table, my mind was blank. I fumbled through clumsy highlights of what little we knew about the tumor, impending surgery, and more appointments ahead. Henry looked at me with clear eyes and said: “So your body is like a garden and you have a weed in it.” He gave me the words he needed, the best gift I could have asked for. I resolved then to repay him in kind and have been trying ever since.
In the days between the first sight of the glowing, giant orb along the midline of my brain on my first MRI, and when my skull was cracked open and it was forcibly removed by scalpel a week later, I was told that any variety of skills I took for granted—walking and writing, among them—could vanish. In fact, the doctors I consulted prior to my surgery were shocked at my lack of symptoms because my tumor had taken residence along my motor cortex and had aggressively distorted the surrounding brain tissue. I went home and launched a blog on CaringBridge to inform my family and friends; I wanted, mainly, to write. Even as soon as the day after my surgery, I returned home from the ICU bursting with words to write down, because I still could.
A week later when my surgeon informed me that the pathology indicated my tumor to be the most aggressive brain cancer possible, the years built into my naïve perception of motherhood evaporated. Suddenly, I realized that the defining characteristics of my identity at that moment—my motherhood, my cancer—were created from my own body. The experience of creating ultimate symbols of both life and death in one body is explosive and my skin couldn’t contain that kind of power; the energetic overflow spilled out onto pages of writing.
While considering my neurosurgeon’s words, “median survival rate of 12 months for glioblastoma patients” from my couch at home, I volleyed between different narratives: hope to live and certain death; mother and patient; caring for my young boys while also imagining them as grown men. I nested fully in each dichotomy, outfitting each as comfortably as I could. Outsiders worried I was being pessimistic when I would admit the very real possibility of death in my writing. “I am being a mother,” I thought. Like throwing a rain jacket in the trunk on a sunny spring morning in Seattle, I had to prepare my boys as best as I could for any possible future that lay ahead.
My blog evolved from perfunctory to a kind of public journaling of my cancer experience. My posts turned from curiously observational—as in, chronicling an unusual experience I expected to survive—to vulnerable and open-ended. After I stopped weeping from my news, I vowed to bind my writing as a memoir for my boys. I was determined to show them the shape of my fighting, which included an overhaul of my diet and a consequent abandonment of my goals as a cookbook author. In an instant, both the two cookbooks I had previously written and my 33rd birthday cake were rendered inedible; I handed over a dream project that represented two full years of work to a ghost writer hours after I was told about my cancer. I shifted to a gentler, healthier lifestyle overnight; in fact, the only thing I recognized from my identity of a few days earlier was my motherhood. My boys became the audience for whom I wrote, my sole focus. I wrote about my cancer experience, things that outsiders wouldn’t be able to tell them. I hoped my words could comfort them—mother them, even, in the smallest way—if my doctors’ prognosis proved accurate.
Without religion in our family’s vocabulary to provide framing, comfort had to be self-made. The children’s books we were given leaned on constructs like heaven or generic metaphors like the passage of seasons. I had only facts to offer: the schedule of my treatment, a distilled version of conversations with my doctors. False hope, opinions or predictions, felt unfair. This meant that we as parents were holding the space of unknown for our very concrete-minded preschooler and I was the cause.
Dying, if that what was happening to me then, was transpiring in front of my family. Motherhood meant that laying around and feeling bad for myself wasn’t an option: if I did only have one year to live and to bore into their memories, I was determined to spend it building LEGOs and cooking for them and chasing them in a tickle fight until I couldn’t anymore. It meant really living, which in turn meant that I wasn’t dying.
Being the mother to my two vibrant sons gave me that.
If motherhood gave me hope, writing gave me escape. Writing has always been a transformative medium for me; it carries my mind away to a safe place in my control. However, in the space where terminal cancer lives, language and words shift, twist, and hollow out. Kind words from friends and strangers drip with invisible fear and privilege. Comfort drains from authoritative mouths that spout statistics, only pooling at my feet when I realized that I wasn’t represented by a number. On my blog for the boys, I considered meanings of words like “patient,” “terminal,” “dying,” and arrived at amended definitions through personal experience. As a writer, the failure of language was at once painful and lonely, but also a challenge. It represented something creative, something beautiful, in a stark landscape. It represented a different kind of hope, parallel to that of motherhood, that provided an altar at which I’ve worshipped every day since.
Through gently introducing our eldest son to the idea of death that is so tethered to our being, we articulated our family’s fundamental beliefs. Together, we developed our religion of sorts, our comfort, and it is so simple: love. We preached that love is something tangible and permanent. It changes you forever; once shared, it doesn’t exist in our bodies, it doesn’t exist in time. Whether or not my body would last, my relationship with those I love—and especially my boys—could never change.
I started to see writing as a magical way to transfer love, as a means to produce something that could outlive me, etching my heart onto indelible pages. It was a form of motherhood unlike any I had imagined. It was more than what my breast had given my sons, more than what my body could offer. I wrote to make permanent my mothering form.
I woke up one summer morning bursting with an idea, like a wild fever dream that screamed in my skin, a nascent creative outburst I recognized from writing my cookbooks. I had seen a vision—every page turn, the whole narrative—of a picture book for my boys to explain my death, even though I maintained hope it would remain a fantasy. I envisioned a creature, a physical representation of my love for my boys, that simply expressed the words of our family’s belief in boundless love-energy. And so, just then in a flash of clarity, I scrawled out the manuscript for yet another book for my sons. I didn’t know it that day, but that manuscript would turn into a glowing symbol of my love for them, a picture book perfectly and simply titled, Lasting Love. It arrived on our bookshelf this past summer alongside the self-published memoir I wrote for them that first year that I outlived my prognosis. I am honored to read it to them and, bolstered by a very rare kind of hope now given to me by my doctors from a history of cancer-free scans, I wonder if I will be able to read it to their children someday.
The experience of writing about my cancer for my boys gave me a will to fight that made me brave beyond anything I could have ever imagined. It made me love my cancer; it dissolved my fear. It gave me the confidence to know that my spirit, my motherhood, exists in timeless place and cannot be surgically removed or tarnished by radiation. It gave me beauty, gratitude, and so many words to express love.
And, as it turned out, it gave me life.
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This article is so lovely, thank you. As a mother and a hospital physician I always feel so aware of our mortality. My 4 year old son has started asking a lot of questions about death and I struggle with how to answer them, as we are not religious either. I love your idea of love as the eternal link connecting us. I can’t wait to read your book! Sending love to you and your boys.
These words and your story are just breathtaking. Thank you!