Advocating for Oscar: How One Mom Is Finding Strength in Adversity
Shortly after Oscar’s first birthday, an abrupt onset of an enterovirus led to an AFM diagnosis, a rare polio-like condition. Alex and her husband Nick have spent the last few years advocating for the equipment and therapies he needs and navigating how to parent a child with physical disabilities.
Ahead, Alex shares how she's approaching a new season of growth for her family that brings clarity of purpose, confidence, and gratitude.
- Written By
- Alex Bonnesen
Hello Spring, and the hope you bring for revitalization from pandemic exhaustion and relief from relentless cold and flu season. And, welcome.
There is a certain notice in the transition from the finality of winter to the newness of Spring, a requirement for pause, restoration, and hopeful sprouting. This has many emotional layers for my family and me, as it holds anniversaries of sudden loss and abrupt change. Yet, despite the heartache these losses encompass, they have also provided opportunity for growth - blessing us with the gifts of deepening gratitude and clarified perspectives.
As Morgan Harper Nichols wrote,
‘I’m proud of the ways I have learned to be strong. I am proud of the ways I have learned to be gentle.’
This journey in life and motherhood attunes me to the daily unfolding of grief and joy; it requires me to process my role as an able-bodied parent of a child with disabilities; it reveals the tension between hope and acceptance; and, it confirms the role of gratitude in each of these juxtapositions. It is a journey of love - grief-gratitude, gratitudey grief.
Our family has experienced how swiftly a shift in health can manifest itself; unexpected and outright brutal. While the flow of our daily routine looks greatly different from how I once envisioned it with a four (and a half) year old, I marvel at my family’s capacity to acknowledge and cultivate joyful moments. Our home is filled with laughter, understanding, and unwavering love and support. There is a constant juggle of managing medical equipment necessities, body safety, appointments, physical therapies, and accessibility requirements while also maintaining emotional stamina and adapting activities to foster inclusive play. It is a juggle that is perpetual and evolving. I mean, this defines parenting a toddler, right? Just that my toddler drives a 350lbs power chair and requires multiple medical machines to maintain daily health. My reflexes have reached a heightened level of speed and accuracy.
This delicate life continually reveals to us the importance of being fully present in this moment right NOW.
Oscar manifests joy so profoundly - it is his essence. He leads us to acknowledge disability and embrace boundless discovery, inclusion, love, and grace. Realizing the interconnectedness of joy and grief has allowed pathways of gratitude to swell up and embrace us just as we are while holding space for the frustrations that arise from inaccessibility and extra time needed for life with a child that is extremely dependent. Something I have grown to notice is how gentle we need to be with ourselves as we grow.
Every mother is an advocate, and I consider it my privilege. I appreciate that my family of origin nurtured steadfast safety and mindfulness in striving to understand others and my solid beginnings when establishing those roots with Oscar. As my sister says, having a child with disabilities is an opportunity - burden. Our voices can be powerful, but I’m learning how much leadership is required from us to achieve accessibility and intentional inclusion. For example: connecting with parents before attending a birthday party for ways to include everyone or what Halloween treats to give out. While the curiosity of others is often lighthearted and gentle, it can be relentless. We strive to educate graciously but sometimes need to courageously set boundaries.
Unfortunately, we have found that much of our world is truly inaccessible, which is why I need to adapt so much of Oscar’s play. I research spaces before we attend them to make sure his wheels can smoothly roll in, if carrying him will be required, if parking will allow for our wheelchair ramp, the list goes on. Reminders of inaccessibility are daily. Sometimes these are completely obvious, but often they are subtle, potentially overlooked by others involved because the intent wasn’t harmful. But, the impact can be much different than intent. It’s that familiar sinking twinge when a space isn’t inclusive (a lack of curb cuts mean we have to go all the way down the block to cross the street, gravel at the playground means Oscar can’t drive his chair, narrow doorways mean we don’t fit through them) or a catchphrase (high five, thumbs up, put up your hand, best foot forward) feels exclusive. Only in recent months have I noticed Oscar’s awareness of his difference in ability. It’s not in a flippant, embarrassed, discouraged, or saddened way; it is simply his response - a matter-of-fact, simple, and clear, “I can’t high-five you” or, “my legs don’t go around on a bicycle,” and “this is how I can dance.”
Of course, I worry for Oscar as an adult when I see how overlooked people with disabilities are. He is little, sweet, and cute, and while I hope the sweetness lasts a lifetime, those other factors are changing, and then what?
It’s unrealistic to protect his path from offense and ignorance, but it is my responsibility and a necessary, collective effort of the community to advocate for equity, accessibility, inclusion, and representation. We must have the fortitude to cultivate spaces, language, and expectation with thoughtfulness and broad scope of ability and experience. How glorious would it be for the sinking twinge to barely flicker or not spark at all? That’s the world I want for Oscar and everyone.
I continually witness the growth that can happen when an inclusive experience provokes a shift in perspective. Partly, I believe that is the fascination I find in parenting Oscar: the invitation to meet his needs as they are without fixing or wallowing in unchangeable expectations, but rather reveling in pride as he demonstrates how to live gracefully.
So, on this cusp of seasonal change, I can feel an awakening within myself. A clarity of purpose as a mother, parent, and community member. A growing understanding of what our family needs, specific to Oscar, but also collectively. And so, as the weather warms, bringing more opportunity for social interactions into the beginning of kindergarten, I feel a budding confidence that I am equipped with the resources needed to successfully advocate for de-stigmatizing difference through inclusive play and discovery.
Of course, theory and practice sometimes don’t communicate as smoothly as desired. And, there is always space for improvement and (un)learning required to engage deeply in this life, isn’t it? Sitting in discomfort and heartache, rejoicing in beauty and wonder, challenging ourselves to grow while acknowledging that gentle and strong can exist together. Oscar’s mighty self is a daily example of boundless hope and bold gratitude (and attitude).
Alex is a model by trade, a home chef by passion, an accessibility advocate by love and a cardboard artist by inspiration. She is currently living in Vancouver, BC with her husband and son, after many years in New York. You can follow along for daily adventuring and creating through her instagram, @akcollins.