This was the title I used for myself when my girls were young – some 20 years ago. As language, education, definitions of ableism evolve, my title changes. I now call myself a mom. Any further description is usually unnecessary. If I do want to differentiate myself for the benefit of people who don’t know my family’s story, I will use the term “Mom of a Disabled Kid”.
My daughter, Quinn, is disabled. Her twin sister, Emma, is not. At one time, using the term “disabled” was considered inappropriate at best and insulting at worst. Quinn is a person living with multiple disabilities – developmental, physical, a seizure disorder, visual impairment, etc. Calling her disabled is simply describing how she experiences the world and not her value as a human being.
I write about grief in general and grief as it was associated with learning one of my twin daughters was born with disabilities. I wouldn’t want Quinn to take this personally, and I know she doesn’t believe my grief came from being disappointed in her. I don’t think I have met someone with such high self-esteem and a sense of their own worth. When I ask her if everyone at her day program noticed and likes her adorable new haircut, she smiles and gives me an emphatic “yes”, not for a moment considering they would think anything less. Oh, to be more like Quinn!
My grief came from a couple of different sources – unmet expectations and fear of the unknown. Later I came to understand how much physical pain she would endure through her life, which added to the mix. Any parent can experience these grief emotions at any time during the course of their children’s lives. It doesn’t suggest we are disappointed in who our children are, or we judge them to be less-than. I certainly don’t.
As a parent I would have wished that both of my daughters experience a life free from an excess of difficulty or hardship. This is neither realistic nor a measure of a successful, meaningful life. The success comes in how we choose to tackle those difficulties, hardships, and unmet expectations. We all have the opportunity to decide to carry on and pay more attention to the beautiful, wonderful moments that abound, rather than focus on the negative.
Over time, I learned to let those unmet expectations go and grew more confident in my ability to care for and advocate for Quinn. This assuaged most of my grief and my worry for her well-being. The exception to this personal evolution is seeing her wincing or crying in pain, which will always feel like a kick to my vital organs.
I’m just a mom. For the most part she is a happy girl. Which is all I ever wanted.