From “Walk with Me: A Journey through the Landscape of Trauma” by Ellen Corcella
Family lives are disrupted and turned upside down by devastating genetic and developmental diseases. Parents must make unbearable decisions about the care of their children. A young girl was failing to thrive at the end of her life. Her parents decided that she deserved comfort and freedom from needles and IVs and breathing machines, that she should not suffer from continued aggressive but futile medical interventions. One day, I found her mother kneeling and sobbing at bedside. It had become unbearable to watch her young child slowly drift away, and it was impossible for them to tell her sibling what was happening. I kneeled beside her, looked her in the eyes and said, “This must be so hard for you.” I stayed there, holding her shoulders.
I met with the patient’s siblings in a small comfortable room away from their parents and sister. The oldest, Sam, told me that he had failed his sister. I understood him because I, too, had failed my siblings by not protecting my siblings from harm. I knew that sense of responsibility. I knew by the time I was twelve or thirteen, as the oldest, we think we are responsible for the terrible circumstances unfolding in our family. We talked about his sister’s medical condition, that she had never been able to get out of bed, that she was always hooked to machines, and that she never played games with her siblings. Sam looked at me. “I have been praying. God is not answering my prayers!”
I asked, “What do you think will happen to your sister after she dies?”
Sam closed his eyes. After several moments, he replied. “Go to heaven?”
“What do you think your sister will do in heaven?”
Sam said, “She will walk, run, and sing.”