Tuesday, October 16, 2007
What's Your Definition?
Deb*or*ah [deb-er-uh, deb-ruh]
1. mother of four children, three of whom have disabilities
2. tireless advocate for her children and others with disabilities
3. advisory board member
6. ex-police officer, current computer engineer, avid reader, gardener, hiker, beach lover, and basically normal person with typical dreams and desires
In the dictionary entry for my life, I wonder if I am defined totally by my children. For the past 17 years my name has changed from “Deborah” to “Chip’s Mom”, “Ashley’s Mom”, “Jessica’s Mom”, or “Corey’s Mom”. When people describe me to others, phrases such as “single mom”, “that mom with disabled kids”, “disability advocate”, “disability organization board member”, “trainer in disability issues”, and “disability blogger” are almost always used. Articles have appeared in many publications about me, but they are always written in the context of my family. My immediate circle of friends are people like me – people with a commitment to the rights of the disabled and those who have children with disabilities themselves, and most of the publications I receive in the mail have something to do with disability issues. For the majority of my life, excluding the past 17 years, was I just a work in progress, an incomplete dictionary entry?
I certainly don’t mean to imply by the statements and questions above that I am unhappy with my life as it now exists. Although the battles have been many and still continue each and every day, I am happier and more at peace with myself than at any past moment. I do feel overwhelmed at times with the insurance fights, the school battles, the medical visits and hospital stays, all of which accompany a significant lack of sleep. I wonder what it would be like to be *just* a parent of four teenagers and facing the traditional issues that come with parenting emotionally immature, know-it-all, hormone-ravaged children. I imagine a life without concerns surrounding IEP meetings – a life without extreme debt due to fighting for the legal rights of my children – a life where physical accessibility wasn’t foremost in my mind whenever I planned an outing or a vacation. I imagine a life where I might occasionally date, might meet a man that didn’t run as fast and as far as he could after meeting my children. And I imagine a life where I didn’t fear my own death – not because I am afraid of dying, but because I am afraid of dying and not being able to care for my children with disabilities. I am afraid what will become of them at that point.
But even with all those worries and battles, I see the difference I am making for both my children and for others with disabilities. All I have ever really wanted from my life was to make a difference – to repay the debt of being allowed to exist and flourish in this crazy wonderful world in which I live. I truly believe I am making a difference, and that is why I am happier than I have ever been – no matter how I am defined.