Almost a year ago the ICPCN published ‘Touching Rainbows: Acknowledging the Child’s Voice in Palliative Care’ linked to World Hospice and Palliative Care Day 2011. Through this publication the reader has the privilege of hearing the voices of some of the many children whose lives, and those of their families, have been affected by life-threatening conditions. The children tell their stories with honesty and openness, through stories, poems and pictures. Children and their families from across the world share their experiences.
The stories, told in the child’s own language and translated into English, are an inspiration to us all. It is hoped they will touch and enrich the lives of many, encourage those travelling a similar path, and instil a sense of courage and joy, despite the many challenges and heartaches.
In the book’s introduction, Joan Marston, Chief Executive of the ICPCN writes “…our founding Statement of Korea included “We ask that the voices of children and young people be heard, respected and acknowledged as part of the development of palliative care worldwide.
“These beautiful stories, poems and pictures from children with life-threatening conditions and their families will leave you in awe at their courage and joy, despite so many challenges and heartache. At times, the child’s own voice can be heard directly; so often their voice is heard through those who love them – their parents, families and hospice caregivers. The children tell of their lives with profound wisdom and acceptance, and our hearts and lives are touched and enriched.
“Just as rainbows show themselves after a storm, these children bring light and beauty to their families and to our world, as each moves through the rain and storm to reach out and touch their own rainbows. Their lives are an inspiration to us and a blessing to their families and all who provide palliative care.”
Some of the children who were still alive at the time of publication have now passed away,
including one brave young man, Michael Mapanzi, who was being cared for at what is now Maluba House children’s hospice in Lusaka, Zambia. Before Michael died, Joan Marston and co-editor Julia Downing, had the extraordinary pleasure of giving Michael his very own copy of the book. They report that he was ‘absolutely over the moon’ to see his story and drawings in print and it remained at his bedside night and day.
Many parents have spoken of the enormous comfort derived from telling their stories. In a typical generosity of spirit they hope that others can find strength and reassurance in reading of their experiences with palliative care and the difference it made and still makes to their quality of life.
You can order your copy of the book through the ICPCN website at www.icpcn.org.uk