ANGUISH, A TWO-WAY STREET!

Every morning as I enter my daughter Ellen’s room at Medford Multicare I look apprehensively at her to read her face how she is doing. In the many weeks she has been residing here I can count on my fingers the good days that they are so few.

This morning she was in clear agony, her face was contorted and she thrashed about in her little prison they call a bed, looking at me with pleading eyes imploring me to do something. Despair and anguish are all I now have, so little hope that that little girl I once held and soothed when she cried may not be with me much longer.

I know that the life of her anguish will cease at some point and I hope it is soon. Her life is nothing but pain and loneliness in spite of her Mom and Dad being with her as long as we can. Understanding that life is a fulfillment of time played out by all of us, that we all live and die slowly as we travel the road. I wish it was me and not her suffering as I would wish for all my children, I know there is nothing I can do about it and that for Ellen, the final act come as soon as possible.

Having a child that is slowly deteriorating is nothing new to me. Having lived through a similar crisis for 8 weeks when my son Joseph passed away in 1981, each day was a series of hope and despair, like a rollercoaster, never-ending violent turns and feeling the world flipping upside down, then the inevitable descent toward the end, because it is what life is.

What I can’t understand is why. Why her? She was born with Angelman’s syndrome and never uttered one unkind word, never hated anyone, never raised her hand in malicious intend and always exuded love and a smiling face. She, is made to suffer for no reason other than to put in question the existence of a God, one who is benevolent and loving?

Under these circumstances, both my wife and I die a little more than usual each day. We have no recourse as we watch her suffer from God’s will.

Sometimes I receive in the mail a solicitation from a religious group asking for money, some set of friars or nuns or some propagation of the faithful, and it does not ring true to me. In their attempts to sway me to give I wonder how with all the stickers with my name on it, the cost of personalization and amount of paper they expend they don’t put that money to good use. There are poor and starving people in pain that have no money, no hope, no tomorrow, why not give it to them in the name of God instead of soliciting in the name of God?