Metastatic Mothering
When diagnosed with a terminal illness, there is a tremendous cultural expectation of seismic lifestyle shifts. We hear stories of women who quit their jobs, travel the world, or write the bestseller they have always wanted to write. Less often, we hear stories of those grappling for a new normal after the old normal is destroyed, those who slowly piece together bits of their lives in a way that allows for rhythm, function, and routine. We do not hear about the extraordinary feats of mere existence, the victories of packing a school lunch or tucking a child into bed on time. We want the drama. And we struggle to reconcile an untimely fate with the need to exist in the ebbs and flows of the here and now.
But this is my life.
At age 32, I was diagnosed with metastatic breast cancer—the terminal, incurable, end-stage kind. In the same week that I received my diagnosis, my son turned two years old. Our family had only just started coming up to the surface for air after the sleepless infant days that stretched well into the still-somewhat-sleepless toddler days. My diagnosis came mere weeks after our family bought a house and moved out of the one-bedroom apartment the three of us shared for the past two years to a new town 45 minutes away.
Our lives had already been uprooted before my diagnosis.
We needed to go on. And I needed to do so with as much normalcy as possible.
Soon after I began to share the news of my breast cancer, I was inundated with well-meaning advice. “Live your life!” acquaintances said, giving my husband and me pithy recommendations to travel the world, to pack our bags and leave behind our cares and responsibilities. Although the thought was tempting, that was not possible for us. Apart from the ties holding us to our reality—largely, my husband’s job and my treatment needs—we owed a great responsibility to our toddler. We chose to prioritize a routine, within the maelstrom of our lives.
New parents often find solace in the axiom “the days are long, but the years are short.” And the days can be long, sometimes tedious, and challenging, with and without the specter of terminal cancer. The quaint monotony of wiping peanut butter and jelly off of chubby, sticky fingers engenders a very different life than one seasoned with travel and adventure. Even so, I feel wistful for my son’s fresh, early days. I forget his frustrated cries and our sleepless nights, and retreat to the place in my mind carved out for sweet baby giggles, the warm, rhythmic infant breaths when he napped on my chest, and his upward gazes, the first imprints of recognition that I was his mother.
In many ways, our first year with my diagnosis mirrored the first year of parenthood. The uncertainty of the day to day, the jarring lack of rhythm to our family unit, the stress and burden our bodies and minds had not sufficiently shifted to adequately carry. We clawed our way through though, fighting for routines, for systems, for answers.
We wanted to understand our new life with this diagnosis. We fumbled our way through each moment, lamenting that these were not the memories we wanted to make, but recognized, much like the fresh early days of infancy and parenthood, we had to push through to get to more solid ground.
As days turned into weeks that turned into months, we made it through the first year as a family with cancer. The day itself was punctuated not by cake and celebration, but by tears of joy and fear. We knew that time was ticking down relentlessly, but we had found an existence once again that both honored the time we have together and serves the limitations placed on our family.
Not every moment lived will be a memorable one—a truth for all family units, not just ours—but that the structures we have built within our new life will serve the needed routines, borne out of challenge, heartache, and love.
I wonder how my son will remember me. How my life will form a lasting impression on his. And I struggle to define the rhythms of our days in a way that, hopefully, will define my legacy as his mother. Will his recollections of me reach beyond that of a parent who was sometimes distracted, short-tempered, sad, or easily tired? Will he remember a mother who was frequently gone for hours at unnamed medical appointments?
I can only hope that his memories will see past my weaknesses, and I try to find moments to show him my strength. Despite my aching, tired body, we still find space for adventures—apple picking, trips to the zoo and aquarium, and places and spaces for him to run around, savoring the moments of ease within a difficult life.
Often, now, I find myself trying to read between the lines on pages not yet written, searching for clues to know the unknown.
My son will not know a childhood in which his mother is not sick. But that does not mean he will not know a childhood full of laughter, adventure, and love. The years have grown infinitesimally shorter, as my little boy becomes taller, lankier, more articulate, and surprises me daily with the depth and breadth of what he knows of the world. His words are a telescope into which I can peer to see the person he is becoming, magnified in the distance, unreachable. I am wistful for a future I may not see.
Sometimes, at night, my son will call out to me. I curl into his still-too-large twin bed, holding him close in a way that feels both incomplete and all-encompassing. The thought of dying and leaving him to navigate the world without his mother leaves me hollow, like driftwood that has broken down and then tossed out to sea. Every day, it’s as if I watch my husband and son slowly float away together as I try to stay above water, knowing, ultimately, the water will win. There is no greater pain than to look at the one person you love more than anything else, love that surpasses all boundaries, and to know that your life, your very existence, will cause them unimaginable heartbreak.
Sculpting a normal life when our life is anything but is my gift to my son.
I will not let the unfairness of a metastatic cancer diagnosis deter me from living a meaningful life.
This life is borne out of the rhythms and routines that will ultimately serve as my legacy.
So while I can, I wipe his nose, snuggle with him under a blanket and read book after book. And, when his head begins to droop onto my shoulder, I will carry him to his bed and tuck him in.
I cannot do everything, and already, I find my limitations making themselves known. But I am still here, and all the mothering I can still do, I will.
Guest essay written by Emily Garnett. Emily is an elder law attorney, mother, wife, and cat lady who has been living with metastatic breast cancer since 2017. Because she believes in the power of one's own voice, she blogs about her diagnosis and treatment at Beyond the Pink Ribbon. She is also the host of the podcast "The Intersection of Cancer and Life," which features candid dialogues about life following a cancer diagnosis, and the nature of illness in society. She is currently a contributor for several online breast cancer blogs, and was recently named one of the 2019 WEGO Health Award winners for her advocacy work. Emily can be found on Instagram, Twitter, and Facebook.
Photo by N’tima Preusser