LONG AGO AND FAR AWAY

Joseph 1979-1981

"Our dead are never dead to us until we have forgotten them."
George Eliot

It was a long week, the trips to the hospital out in Nassau County and the all-day stays by both my wife and I. The weather for January was the usual, cold, blustery and often snow falling and rain pouring down.

Every morning we entered the hospital, often first searching for a parking space and then fighting the elements to reach our son's room, the wind biting through our clothing we would enter apprehensively the ICU and ask our questions. Often the answers were not the best and we needed to put those answers under the surface as we greeted our child, hooked up to an IV, sometimes placed at various points in his black and blue body to keep him alive.

Tomorrow is his anniversary, since 1981 when he passed from this world to the next, he has been in our hearts every day. He, along with his older sister, are the reason I serve on the Board of Director's for AHRC Suffolk, it is my way of doing for the rest of my life all I can for them both. But something more important happened, they, my two children gave me a real reason to live, not just for them but for all those who fight for their happiness and survival that suffer from developmental disabilities. I have grown to expand my agenda and grown to love them all.

Each wheelchair tells a story; every crutch or aid illustrates another of their fight. Some of these wonderful and innocent people become attached to me on a personal level, some I have cried for when they passed or became a sadder physical state than when I saw them last. I've asked God so many times, why? Why is this all necessary, why must they suffer and their families too? How lonely is the frustration, how debilitating is the pain, and how forgotten is the public awareness?

That faith-filled January day so long ago will be etched in my brain, inscribed in my heart and will always weight me down, as we tried to the last hour to save his life.

The day he died started with my wife and I leaving the hospital at about 5:30 that morning and heading home to get some rest. We had sat up with him all night and decided we needed a shower and some rest, some nourishing food to sustain us and went home. We sat with relatives and friends all day, talking about other things than the agony of the coming of a defeat we knew we would not be able to fully understand. His doctors couldn't understand it, from the day he entered the hospital the Friday after Thanksgiving Day.

When everyone went home, my wife was in the shower and I was watching a thing called M TV when the hospital called and asked if we wanted to pull the plug, and we said no, we wanted to see him first. When we arrived at the hospital, a priest raced past us on the stairwell and I began to wonder. As we entered the ICU, we looked down the long corridor and saw his room, and as we got closer, the nurse was sobbing and covering him like he was cold, his little hands were freed of all the IV's, just a gentle look of relief carved into his round little face. We were too late!

Somewhere he sits now up in a Paradise, probably mourning us who he left behind, as we are dealing with earthly pain and remembrances, free from his own. I go to his grave every chance I get and I have the conversations that continue to keep him close to my heart and soul. People say that God only gives you what you can handle; keep on dreaming people it just isn't true. What God gives us is free will, the ability to do and think for ourselves, there are no such things as intercessions on the behalf of those of us on Earth. I have trouble with the cloud of mysticism that offers band-aids for deep wounds, pointless sayings that really don't hold any meaning after the fact. I know people are being kind and offering solace, but yet I know it means nothing in the end.

When I go to the cemetery, I visit his grave then start my rounds. Visiting both my folks and in-laws graves, my wife's parents and some children that also passed too soon. Those are the parents I feel for: will never tell them it is what God gave them because they can handle it. They can't either, don't let exterior looks fool you, going to bed with a shattered heart is not what God wants for you, losing your grip every-once-in-a-while over lost days you realize, such as when someone marries or graduates who is the same age as your child would have been, was not in God's plan for the child or yourself. It is but what life is all about, in the end.

My son Joseph was my third child. Joseph looked like me when I was his ages, an aunt said he looked like someone had cut my head off and put it on his body.

"In three words I can sum up everything I've learned about life: it goes on".
Robert Frost