We first ran across the story of Vancouver-based mother of one Alex Bonnesen through a beautiful essay she wrote for DÔEN Journal last year. In her piece—which we are reprinting below, with her permission—she recounts both the joy and grief she’s experienced in raising her now 4-year-old son, Oscar, an enthusiastic, medically complex pre-schooler. You can continue following her family’s love-filled journey @akcollins on Instagram.
Anytime I’m given the opportunity to sit and reflect, I welcome the focused time. Although, I imagine this collection of thoughts will be in increments, as toddler life is a busy, distracted life. Within solitude, quietly thinking about my motherhood experience from the early moments; surviving that first year on little sleep but boundless, fierce, blossoming love and purpose while navigating this newfound responsibility for dependency.
Embracing the birth of myself as a mother, alongside the unbridled joy of watching in marvel and delight as my little grew. Through the newness, there was an undeniable purity to how profoundly I loved Oscar and would abide him. The fragility of life can spark so suddenly, so relentlessly. The depths of our bond and the unwavering magnitude of my love have been tested over and over again and have been foundational to my capacity throughout the unexpected experiences and wave after wave of uncertainty with Oscar.
Shortly after Oscar’s first birthday, he experienced a very abrupt onset of enterovirus that manifested in his spine, causing paralysis to his body. The events that followed finding his limp body in his crib early in the morning and the ambulance ride to the hospital are forever part of my being. There was a time afterwards that the sound of a siren would send my physical body into distress and my emotional self into that wave of trauma all over again. The cloud of confusion and magnitude of worry still makes my body shaky when I recall the events of that day. Oscar was diagnosed with AFM, acute flaccid myelitis, a rare polio-like condition affecting his upper spine, causing the tone of his body to be flaccid.
That last sentence almost feels like a script to me now, robotic with execution of description. I’m not sure whether that’s for self preservation or detachment from the remarkable number of times I have shared that information verbally or in written form. Continually needing to define Oscar by what happened to him, rather than his being, to medical professionals regardless the rawness of that given day.
As a mother of a child who has experienced an unexpected medical circumstance, I feel like my “mothering” has almost been magnified for judgement and praise. Mostly bountiful praise, which some days fills my weary heart and allows the breath of resilience and strength I need to carry on. Some days it feels abrasive and rough against my sensitive and exposed spirit. Having a vibrant, funny, curious, articulate, joy-filled child is already cause for attention, but adding a physical disability with medical needs on top of it is readily cause for notice.
I struggle inside of living in this balance of striving for further healing and improvement for Oscar, while accepting and leaning into his current capabilities. Partly that’s my ableism, but it is also the mother in me. Not wanting to fully settle into this reality while making the most and brightest of where we are at. I’m triggered by future planning related to equipment and language like “quadriplegic” because I so deeply want to resist the limitation of now and manifest unlimited possibilities for Oscar.
This creates a cycle of confusing heartache and weariness. I still feel in shock when someone blatantly asks me about Oscar’s disability or what happened to him in his presence. My experience of that is, judgmentally seeing what is “wrong” with him, as if there is something “wrong.” In my heart, I want to deny a response to the questions that focus on his disability and share all the wonder of Oscar instead. Even though I believe in conversation and wholeheartedly encourage understanding, I’m grateful for the grace that’s threaded in me as I hear myself respond respectfully and with a fierce love and protection for Oscar.
Adaptability and natural willingness is the wonder of young children. Oscar’s only experience is his current experience—one that is filled with joy and enthusiasm for all that is. Inside of that experience he knows steadfast, monumental love. I reflect on that when my heart is aching and my grief feels continual and crashing. It is my grief. Creating brave space for that grief to exist and heal in all its grittiness is crucial for my self and my best mothering, being, and partnering. It allows me to clearly recognize the brilliance of joy and grace, especially in the little moments. The highlighted relationship of grief and joy existing simultaneously, continues to amplify the more I journey. It shows up for me daily and likely always will.
Our home is blessed with an ever-flowing grace and gratitude. This unanticipated course for our family has surfaced the true essence of ourselves, individually and collectively. My husband, Nick, has unlimited resourcefulness for advocating for Oscar, humour, and a thoroughly detailed, steady, and methodical, intentional yet vulnerable spirit. He balances out my “in the moment” living in the present vibrance perfectly. Our partnership feels solidly rooted in an understanding of what it means to endure together, scared and with unimaginable heartache. Prepared for the waves to crash and instilling trust in the calm and quiet which sometimes felt like the darkest moments to withstand. Leaning into each other and our families, our village of support was necessary for survival. I am forever thankful for our families and their efficiency and tenderness. They showed up and keep showing up. They hold, absorb, pray, trust, hope, and travel every unsteady step of our path alongside us. My love letter list is endless, truly.
Here I am, showing up and processing a couple years later. More medical knowledge that I ever wished to know and navigate but grateful to have acquired it. Settling into our home in Vancouver, back in my hometown after 12 years in New York. Remembering to be gentle on my heart, especially with the change in season. Celebrating the joy as it shows up, because it always does with my sunshine boy, Oscar, who innately radiates joy that sustains me even on my most profoundly challenging days.
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