WHEN IS ENOUGH, ENOUGH?

Being the parent of a child with a disability, I often wonder when we as parents of those children, reach a breaking point. Being a co-chair of the Guardianship Committee, I see parents that need to surrender their roles as caretakers, because they are too old to care for their adult children. They keep their faith and I wonder how? Many of these children with disabilities do not toilet themselves, nor do they speak or communicate in any way or form, except to cry! The despair is overwhelming, as is the resentment that follows. They come to the agency, many are too old to even travel, and yet they dream. Some travel all the way to Albany, stooped over, in pain with walkers, canes and still dream for a better life for their adult child. They place their faith in God, then: get to work!

Many people start to question if there is a God, if they should continue to believe in Him, and if it would matter. After all, their child or sibling did nothing wrong, and here more than one is suffering, both the disabled person and the caretakers, and family.

We see our daughter Ellen about twice a month. We pick her up from her home, where she has an air-conditioned bedroom, decorated to the hilt, with reminders of her family all about her. She lives with seven other people, all in similar degrees of suffering, all with the same loving care. Still when we look into her eyes, we sometimes become very angry with God. We start resenting even the spiritual moments we do spend. We see Ellen, and we see innocence, love and affection. We witness her happiness and her giggles when I do stupid things to make her laugh. Then again, we wonder: why?

When we were growing as a young family, it was difficult to accept the fact that the dream was over, that new plans were needed to be put in place, and in a hurry. We witnessed siblings with children, discussing normal growth patterns, and we harbored sadness, were left out of the conversations, and became aware that our lives were to be different and difficult. We saw the awkwardness of our parents and siblings in trying to communicate with Ellen, and Ellen trying back. It seemed like people were saying: “Come get this child, please, I’m very uncomfortable with her.” We understood as her parents, but we still felt the hurt, the second-class citizens we as a young family felt.

But if God took care of all of life’s inequities, what would be our purpose here on earth? How would we demonstrate humanity? How would we be relevant to this world? I know that all those people in the past, in spite of their discomfort with Ellen, were merely human, suffering in their own small way with the disability that Ellen has. No harm or hurt could come to Ellen, and today we see that clearly. But I think I see clearly what God is doing, what he is saying, and what he has done. Ellen is a teacher. She drives home a lesson ever day, that there is indeed a God. He is in all of us, and by our actions, what we say and do, makes us relevant to this world.

I truly believe: that God only observes. I think he wants us to do his work. We must reach down and wipe the tear of a child. We must reach down to help the poor and help heal the sick. We must reach down and aid the elderly, because then we can reach up and become part of humanity, and a child of God.

Many years ago, when my son Joseph was dying in North Shore University Hospital, my wife and I had spent round the clock time with him. We had slept the night in a waiting room, and from exhaustion, we went home to shower and get a bit of rest. As I lay on the couch, the phone rang, and the doctor on the other end told us to hurry, the time had come. We went to the hospital that cold January night, and as we entered the building and were climbing the stairs, a robed figure, sped past us and raced up the stairs. That robed figure was a priest, racing to my son’s deathbed to give us spiritual comfort. It helped. He helped us get a prospective during a cold horrible time.

Is there a God? I think so.