IT’S ALL IN THE EYES

My wife Ellen and I have the very same physical extension, a growth that has been married to us since 1972, in the guise of our first-born child, Ellen, a now middle-aged woman 48-years old. In these past 48 years my daughter Ellen has been our identity, and where we go collectively or separately, there is the recognition of a fact, now basic, that we are the parents of a disabled child.

For most of my daughter’s life we have tried to come to grips with the fact that we were chosen by God to bear this reality whether we want to or not. Indeed, in the early years it was made painful by strangers who looked at my daughter who appeared as ‘normal’ as any child but was swayed not by obedience, but by proclivity that over-rides all sense of what others perceive as ‘normal’ by her affliction.

The strangers who viewed her as she walked or tottered in public, her hands raised to her hips extended outward, her tongue sticking out and drooling was looked at with disdain or at the least, amazement or even amusement to what may be the problem as they judged my wife and I. Little children would stare at my little girl and ask their parent what was wrong. It all contributed to the many emotional stab wounds that pierced our collective souls and reduced our hearts to sadness and emptiness. As we dealt with each incident we would retreat into the comfort of each other and our loneliness and despair that accompanies a family who becomes avoided by other families. We were always or tried to be good neighbors, if someone needed something we were there, but because of that strange child we were better off alone so they thought.

There was family, but like the outsiders, they too for the most part stayed a distance away, because they had to deal with the ‘normalcy’ of their lives and besides, had opinions of us as to how we should raise our child. Their knowledge of developmentally disabled children was more extensive, their abilities to teach, and most importantly discipline a child-like Ellen was far more superior then my wife and mine were.

But always, we would retreat to our world and cling to each other, creating an inner circle of strength and acceptance that the world was not understanding because they did not know, much of it not caring, and most of it afraid of a reality that was ours. There was an echo in our ears, a defensive refrain to cover the inability to understand as they all said; “God gives you only what you can handle!” Often, I wanted to kill someone when I heard that.

We love our daughter, when we look into her eyes we see only love back. There is nothing else there and nothing else that needs to be there. She reaches out to us with her smile, her specialness so complete it makes me incapable of anything other than loving her and telling her so. She doesn’t understand my words but she does know what I am saying. Her doctors describe her as ‘tactile-defensive’ a fancy term that means don’t touch or come near her, yet, she allows me to hug her as I try to gently ask for that hug, that little kiss, that special sweet feeling of reward she has given me for all the years we have sought to keep her safe, loved, and happy.

Her brothers have been amazing, both of them, they have loved her for all it is worth, and that worth is plenty to them, as they ask about her every time we speak to them. They too worry as we do, and I often worry about how it has affected them.

Every day I think about my son who passed away in 1981 at a tender age of almost two, I have mourned him and I can continue with life, on one hand, yet, on the other hand, I mourn every day for my daughter, knowing that what could have been, is not, never will, and so I hurt inside. I see a bride outside a church and think about what could have been, I hear about a new grandchild and I cry inside for the lost grandchildren she could not give my wife and I. I read about a college graduate or today, of a middle-aged woman who is climbing the corporate ladder and I grieve for her, my wife, and my sons.

As she lies in a nursing home recovering from a broken hip, colon cancer, pneumonia, and the Coronavirus, she shows me what toughness is and what it means. She plows on and refuses to succumb to anything including people’s sneers and opinions.

Few have ever asked how she is doing, some have as a matter of course, and some of my in-laws and my baby sister Joanne, my best friend and brother Phil, and some outside the family friends but for the most part, no one cares.

So, I write this today to remind myself that my daughter Ellen is whole, she is alive and teaching me that I have to forgive, forget, and move on to better things in life. It has been months since we saw her last and she is not totally over the virus, but once again she is fighting her way back. If it were any other woman I would say she is one tough gal, being she is my daughter I will honestly say she is one tough teacher.