Love Found a Way

Love Found a Way

This is a story of a horrible disease. When the test results are in and the diagnosis confirmed, the doctor looks you straight in the eye and tells you that, not maybe, not in the far distant future, but soon you are going to die because you have ALS. This is what happened to my son Stephen in December of 2004.

As my pen touches the paper tonight and forms the letters of the words, my mind still wants to refuse the reality of it. And yet I write this to tell you that ALS, the disease, was not the victor here. The victor was Steve. It is true that a year and a half after he was diagnosed he died to this world. But in the process, he taught us how to live.

That December day he looked right back at the doctor and accepted the fact and announced he was going home to live for the time that was left to him and he did just that.

Steve, Tammy and their family live in Massachusetts. My two daughter’s families and myself in New Jersey.  His one brother lives in in New York City and the youngest in Pennsylvania. Even though miles separated us, we banned together and made a plan. We kept in touch daily with phone calls and e-mails.

Julie and I were the only ones not working outside the home so we made the trip to Massachusetts three days a month to be with him. One of those days was taken up by his monthly visit to the medical center, an hour away. After the long grueling day we would go home. I would make his favorite hot fudge sauce for sundaes and we would share the precious time, storing up memories and being together.

When I was at home we e-mailed daily. In one he wrote," I am blessed to have so many people love and care about me. I’m thankful that God continues to bless me with peace."

Monthly, his body deteriorated.  He could no longer speak for ALS patients do go silently into the night.
         
At Thanksgiving of the last year they were able to come home for the last time. He could still eat and managed some of my special stuffing, his favorite, and jellied cranberries.

Soon after that he had a tracheotomy and never tasted another morsel of food. Next he could no longer drink and then for the first time was hospitalized with pneumonia.

We knew that time was getting short but he staunchly hung on as he wanted to give his daughter Bethy her birthday present in July. As time grew shorter he never wanted us to leave and each time it was more difficult to leave him.

The day before Bethy’s birthday the phone rang and it was Tammy, Steve had given
her the 'sign' that it was time.  The day after Bethy’s birthday, hospice would come in and the ventilator which made him breathe would be disconnected. Phone calls were made to the siblings and spouses. We all started for Massachusetts. Steve gave Bethy her birthday present and we each had a private time with him and then we all went back to the hotel to wait for morning.

We arrived back at their house early the next morning before hospice .. Steve’s pastor was there and every member of his family. The roomful of machinery was whizzing and ticking away. The hospice nurse came in and gave my boy a shot of morphine. Tammy stood on one side of the bed and I on the other, each holding one of his hands. The nurse turned off the ventilator and there was silence in the room.

I smoothed back his hair and whispered "I love you." His breathing became shallower. I counted the time between each breath.  They became further and further apart.  There was a space and then one last breath and he was silent. I remembered another mother who had stood by her Son and shared her desolation. In all the torments of this illness Steve had remembered too and never denied his God.

I walked out of the house into the hot July sunlight. I looked across the street at the church steeple. My heart broke.  But God and love had found a way to give us the strength to walk the final walk with our loved one and we were thankful.
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