At times, I’ve asked myself that if I had a choice would I do it all over again. My answer to myself is yes I would, but would handle some things differently. I am referring to advocating for my daughter, Alison who has severe developmental disaiblities and for others in her situation and our families.
One of the main things I would have done differently was to take time for myself. My priorities were on Alison and her needs along with my two sons and my family. By not taking time for myself, it prevented me the opportunity to look at things possibly in a different perspective, to look at things in the eyes of my sons and family, and yes in the eyes of Alison.
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The emotional roller coaster ride I was on was pushed to my wayside. I became entrenched with ensuring her needs were met and I wanted to be the one who accomplished that, me, myself and I. Besides who else was suppose to do that for their child or children?
There was so much I couldn’t do for Alison. We did not have the typical mother-daughter experiences. In advocating for children with developmental disabilities, I felt this was something I could do for both Alison and our family. In my desire to help, there were some things where I failed myself and family; but I knew and felt what I was doing was helping “the Alisons of the world” and their families.
My intent was always good, despite many times being angry; angry that assistance for children and adults with developmental disabilities wasn’t a given. It was something that had to be fought for. It took time from Alison, my sons, my family and from me. Without fighting (yes it was a fight) from advocates, families and the person themselves, assistance would not be available for home and community based services for those with developmental disabilities.
Many years ago, I ran into a former school mate who told me there were people who condemned me… that I did all of this for me. My first response to him was that I did it for Alison. After a few minutes of thinking about it, I further responded with that yes I did it for me … to help my daughter and family.