Who am I now?

This past Monday I returned to the task of editing a journal article that I had started writing two months ago. The COVID pandemic, the province-wide shutdown followed by the frantic move to teaching university courses online, and my son’s hospitalization and death, meant that for several weeks I was in survival mode. I only worked on projects that absolutely needed my time and energy. Things like grading student work, and ensuring that important course content moved online, all while navigating an ICU admission during a global pandemic, left little space to work on other projects.

So it was only this week that I returned to writing my forgotten article. About five minutes into my work the opening sentence brought all of my efforts to a grinding halt. That first sentence read, “I am the mother of three sons, one of whom lives with profound disabilities and complex medical challenges”. This has always been how I introduced myself and my academic work. It is the opening sentence of many of my professional bios. My doctoral dissertation begins with a story about parenting my son.

My academic work focuses largely on the experiences of mothers caring for complex children. As a mother working in the field of caregiving ethics, where oftentimes the loudest voices are men who are not mothers and therefore speak about the topic with academic detachment, I felt it was important to ground my work in the lived experiences of women and mothers. I have always been committed to the belief that the experiences and expertise of mothers mattered in a way often not valued by the academic world, not to mention the medical and social services communities we mothers navigated on behalf of our children. As a result it has always been important to me to talk about my personal connection to my research interests. I wanted to assert the idea that my personal experience as a mother of complicated kid, rather than being a confounding nuisance that compromised my research and work, was the source of great learning, insight, and power. Being the mother of a child with significant disabilities became the foundation of both my personal and professional identity. In my mind, rather than making me less of an expert (as the ‘powers that be’ often implicitly and explicitly communicated), it became my ‘superpower’, to quote Greta Thunberg.

The messages of our society are often that we are “just” mothers. For me, this became the source of much anger. That anger motivated me to study what it meant to be a maternal caregiver, and that journey was empowering. I became utterly convinced that being a mother conveyed valuable expertise unavailable to professionals who lacked that lived experience. I began to speak with a new sense of confidence in my abilities and knowledge. Being a mother became the source of great pride. I would not tolerate the role being devalued by society, or the academy.

As a result I am finding that my journey of grief after Matthew’s death is unusually complicated. It goes without saying that I miss him everyday. But this week I also discovered that writing that opening sentence of my article became much more difficult. I struggled with the past tense. I didn’t know how to introduce myself and my work. If I was no longer a mother of a special needs child, did I still have a place in conversations about caregiving? What was my professional calling? Has it changed? A professional identity I struggled for years to discover and own, now seemed called into question. I find myself uncertain about my footing and direction.

Published by extremecaregivingblog

Wife, mother, extreme caregiver, friend, knitter, soccer player.

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1 Comment

  1. My mother died seven years ago, but she will always be my mother and I will always be her son. Every now and then she reminds me of that. I trust that Matthew will offer you the same affirmation in his own way. Peace to you Laura, mother of a special needs child to the day of your death and beyond. I am utterly convinced you still have a voice in the conversation, but you are now speaking from a different place, but you are speaking from that new place as a mother.


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