ROPES AND CHAINS

--> Often in our lives we can stoop to self-pity and bemoan the fact that life is not what we want. We come into this world, are raised by good people and do what is expected, yet something happens and we wonder why, what did we do to deserve it?

My daughter was brought into this world with that certain something that has dominated her life, all 44 years of it. She knows nothing of logic, speech or reasoning, she only knows fear, anxiety and crippling disabilities that constantly attack her being. She has what we think is ‘Angleman’s Syndrome’ or also know as ‘Happy Puppet Syndrome’, it robs her every moment of her waking life; of her life.

Ellen’s life is governed by ropes and chains. They keep her from joining society, of being accepted as an equal, of denying her a sense of joy from accomplishment, yet she lives from moment to moment, unaware of her plight, unable to speak. But she is quick to cry from fear, until she becomes so enraged she flails outs and fights for herself. When ever I hear of someone who complains about their child, I think of Ellen, how hard she has it. Whenever I hear of someone’s child dying, I think of Ellen and how we mourn her everyday. I too lost a child, but for some reason, this is getting harder for me than the loss. Maybe because the loss has a finality, yet Ellen’s is a continuous death.

When Mom passed away in June of 2014, she was 96-years of age, maybe it is time to die at that age as all her functionality was gone. She lay in her bed on those last days, unable to lift her arms or use her ands, she was immobilized and stared out a window. I would come and talk to her, get her to remember and talk about things she recalled about events and people, yet I knew my daughter was in worst shape, she has no memories and God forbid she ever is in that kind of situation, will only add to the final cruelty of life. My daughter has died at birth in a way, has never found a meaning to her life.

The irony is she has great meaning to her family, my wife and sons and myself. We hover over her in presence, and thought, concern and advocacy, we are her family and love her.

To add to all her problems, Ellen recently tripped and fell, breaking her lower right leg. We don’t know how or why, but the staff where she lives found her on the floor. She had a compound fracture, and is in a cast. Her leg will probably heal, but what we fear is she may not be able to re-acquire the skill of walking again. How cruel will that be? How unfair will she be treated once again? Even Hitler walked on his last day!

I ask you, only out of love for my daughter and family, that you pray to your God, that she walk again. Just once, put her in your thoughts for a moment and pray she will have the joy once more to walk.

Thank you.