|My lifeline of hope, my board|
So often I sit in the rehab rooms and hospital rooms and wonder what will be when I’m gone. Maybe I shouldn’t think that far ahead since what happens after I leave this Earth I wouldn’t affect. My daughter Ellen has a most uncertain future at the least and an unpredictable few moments ahead. One never knows from moment to moment, be it a seizure that last as few minutes or a fall that affects her physical stability, taking a little away from her ability to freely and independently move about.
Sometimes as she lies in her bed I look at her and wonder what she is thinking about. Where does her mind go, does she understand what has happened, is she frightened?
Being overwhelmed is not hard to do when you have a child most of your life who has the title of mental and physical disabled. It means as a parent you need to plan, look ahead not for yourself but for the child. And what does this mean to all your other children? You have to shelter them from the disability by trying hard to free them from any responsibility for their disabled sibling when we as parents pass on.
All too often I hear these words: “God only gives us what we can handle.” THAT is a crock of BS, concocted from relief that they themselves won’t face it themselves, so they try to shore you up and hope you can believe it. They mean well, but they just don’t understand.
I joined an agency, AHRC to provide for Ellen’s future. I felt that was one avenue I could use to help her be a human being with humanity embracing her as it would any normal person who is not disabled in its own way.
When she was born, I was full of hope, dreaming dreams only a parent could dream. I imagined her coming to my home with news she was marrying, I would then dance at her wedding with her, that she is pregnant and then bringing those children to their grandfather to play with, love and cherish. My wife too had those dreams. Shopping with her daughter, pictures of her graduations from high school and some university, just like other mothers.
There is no wedding, no dance and no shopping, just the sadness of a future of uncertainty and despair to a great degree.