|
my 12-year-old nephew died at midday on Easter Sunday. He had severe cerebral palsy from birth and lived all his life in a wheelchair. He could smile and laugh and communicate with his eyes and subtle hand signals. His vocalizations were understandable, though a code of his own. My sister and her husband kept him at home, and gave him a good quality of life. They taught him many things and he taught them many things. They often had to contend with those who wondered openly why they would bother to invest in such a compromised human, but they also were lucky to have others around them who joined their support team unquestioningly. My nephew's daily struggle to survive came to an end abruptly this week. There is no strong feeling among the close family that "he's better off," though that is a typical observer's reaction. Since we know him well, we are having the same sense of loss you would feel with any child's death. Trying to celebrate the life, no matter how short.
I'm finding the death of a child feels so different from the death of an older adult. More questions about why did they live at all, the loss of that child's potential, the mystery of who they might have become. And of course the illogical notion that a child should be spared such suffering. I would think for a parent there is a lot of anger about the loss, and guilt about not doing enough, etc., even when nothing could have been done. Parents of souls who leave in childhood can teach the rest of us a lot about acceptance of the human condition. There are no guarantees, and all our fondest illusions may be shattered in a flash. The death of a child is an especially hard challenge.
|