My daughter is one of those children and my wife and I are one of the sets of parents that view the fear face-to-face. Our biggest problem is that my daughter Ellen can't talk, she can't tell us what is wrong, we live in constant fear that she is in pain and we don't know it!
But what can we do? We discuss the situation with the neurologist who with all his/her professionalism, still knows only two ways to treat: the manipulation of doses of medication, or physical solutions such as wearing a helmet. But what else is there?
Years ago, we took Ellen to the Center for Basic Research and they did an incredible job of evaluating her medications and throwing most of them out. New meds were prescribed and we had a remarkable change for the better in Ellen's behavior and health.
Recently Ellen has been once again acting out. She becomes very agitated when it is time for her to eat. Like her mother says to me every so often, we are waiting for the other shoe to drop. When and where will that be?
For 44-years we have been groping in the dark for answers to questions that have no words, and so we can't recognize the answers. The shame is we don't know the questions so we can't see the answers. Like one walking in a dark room we can only probe blindly, in fear that we will slip up and lose our child.
It has taken a toll on our health, the pain is difficult to understand. We lost a child once, and we mourn him every day, yet so do we mourn Ellen every day that passes.
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