IF ONLY

Many of us have had sadness in our lives, some of that sadness is personal, some of it about things that happened to others. I have a sadness that haunts me everyday of my life for the past 42 years.

I often think to myself: If only… if only things were different, if only we could re-wind the past and start over, if only it had happened to me and not someone else.

Every other week I go out to Shoreham/Wading River and pick up my daughter Ellen from her residence where she lives with her peers, people with disabilities. I enter the building and see the wonderful staff and am grateful she has this home. It is her home after all, so I remove my hat and greet staff and say hello to any resident I meet. I try to have a conversation with them, if my daughter will allow me. She sees me and is so happy, she charges me, greets me with a big all encompassing hug and squeezes me, patting my back. She is telling me how glad she is to see me! I love that. Because she is so happy where she lives, and because the staff is so stellar in their duties and devotion to my daughter and her cohorts, she is just as happy when we return and she goes into her home again. That makes me feel great.

But then the rest of the week must be lived, and with it all the people that occupy my world either voluntarily or involuntarily. I see mothers with teenage children, children old enough to be my grandchild, and then I see the mother and her interaction with her children and think: If only.

If I am visiting the sick at a hospital, and I see a nurse in her early forties, I think: If only, and feel the fact that I was cheated out of what everyone else takes for granted. I know I can speak for my fellow board members when I express this, because they are in the same boat. But then something gets hold of me and I realize that what I’m feeling is only the expressions that my daughter is unable to express and unaware of how much she has been cheated. Who cheated her? God? Her parents? Or is it the quirks of life, the fact that these things do happen, and what am I going to do about them. I don’t blame anyone, but sometimes when I get this way I want to blame everyone. How can you live your life so care-free while you have all your ability to reason and my daughter, who’s life is care-free, is unaware she is. A paradox.

Ellen is a very simple person with a complex personality. She doesn’t want much, doesn’t aspire to become anything or anyone, and is extremely happy. Yet there are degrees of acceptability on her part of who she wants to be close to. There are many people that she wants to be close to, and demonstrates that by walking up to them if she knows them and giving them the huge bear hug she will give me. She will greet them with a big smile and eager pats on the back. Her eyes will dance in delight and her smile is so wide you hope there is room enough on her face. She doesn’t pretend, and when you are greeted, it is a sincere greeting, filled with genuine love and affection. How did you earn it? You didn’t, she wanted to give it by just knowing you. How many of us ever feel that way?