Timmy’s Story from “Hospice Care for Children” 3rd Edition, Edited by Ann Armstrong-Dailey and Sarah Zarbock, Oxford University Press
Timmy, a five-year-old child with nephrotic syndrome, spent his last few weeks of life in a leading children’s hospital. When his prognosis was terminal, he was moved to a room at the end of the hall. Timmy’s health-care providers, feeling failure and denial, and his parents, unable to bring themselves to face the inevitable death, withdrew from him emotionally. Timmy blamed himself and tried to understand what he had done to drive everyone away.
Timmy died without physical pain but emotionally isolated, without the reassurance of his parents’ love. To paraphrase Mother Theresa: The greatest pain on earth is not the pain of hunger or poverty but rather the pain of isolation, abandonment, and feeling unloved. Through hospice-type support, Timmy, his parents, and his health-care providers could have known what they were feeling was normal. They could have cried together and expressed how they would miss each other. They could have shared the picture of the butterfly, bearing the words, "I Love You, Mom," which Timmy drew just before he died, alone.
The loss of a child can be a devastating experience for the family. Children’s hospice care can turn this potentially destructive experience into a strengthening and bonding one for the family. The knowledge that you have done everything possible for your child can be of great comfort