A SPECIAL BOND!

She doesn’t speak, yet she says “Mama” or “Mumma” and “Appy” for Happy. Both words are expressions of happiness for my developmentally disabled daughter Ellen and yet they are the only words she knows. Forty-seven years ago we met when I stepped out of an elevator at South Shore Hospital in Bay Shore and she was on her way to be cleaned up by her nurse, having just been born. I was on my way to see her Mamma who had just stepped into the world as my personal hero as she is: today! She became the mother of my child.

What struck me was that I was a father now, to a beautiful little girl who stole my heart and I never realized it until she sat in my arms for the first time that day.

Since the magical day she was born, we have become like one with my need to make up for the life she has, one I am responsible for as her father. When I retired I was able to attend all her doctor’s appointment and evaluations, learning about her and getting to know this little girl inside and out. I dedicated almost 33 years to her wellbeing by becoming a member of the Board of Directors that housed her daily program and residence. I traveled all over the State of New York representing her agency on a statewide basis, advocating for not only her but also those who were at a disadvantage like she is.

When my wife Ellen and I were told she was a ‘special child’ it was devastating and took us to a new world, one that few people shared. It was a world of frustration, heartbreak, and despair, yet the little things that she did accomplish made us proud of her tenacity and fight.

Both family and friends often ostracized us when she did not act normal and people would become silent or look away or offer some kind embarrassed reaction. You see, when you have a special child you must try very hard to educate her and those who stare at her or avoid the reality of it all!

Stepping out in public with a child who can’t speak, can communicate minimally and doesn’t really know how to express herself causing people to stare at the abnormal child, become harsh and not understanding what cruelty they show, makes a parent of that child withdraw into the safety of the family unit. There is no social life, extended members of the family are grateful they don’t have the burden and to exact some sense of understanding that you really do not wish to hear: “God only gives you what you can handle.” That is supposed to make you feel better yet no one ever thinks of the child, what is she given by God? I guess she can handle a life of sadness; one of feeling left out in the world or one of physical pain, social rejection and sometimes fear.