By the time the 25th Annual Remembrance Ceremony started, every chair in the chapel on the seventh floor of the NIH Clinical Center had been taken and the standing space behind the rows of chairs had filled in. Despite the large number of Clinical Center staff – doctors, nurses, researchers, administrators as well as Children’s Inn staff – the room was quiet.
A piano prelude performed by Dr. Stephen Chanock, director of the National Cancer Center’s Division of Cancer Epidemiology, broke the silence to begin an hour filled with singing, poetry readings, speeches and presentations to remember and honor those NIH pediatric patients who died over the past year from incurable diseases. The annual remembrance ceremony also serves to help Clinical Center and Children’s Inn staff come to terms with the losses of children and young adults they shared deep experiences and formed close bonds with.
Dr. Lori Wiener, co-director of the Behavioral Health Core and head of the Psychosocial Support and Research Program at the National Cancer Institute’s Center for Cancer Research’s Pediatric Oncology Branch, focused her keynote address on the importance of storytelling in learning about and addressing difficult topics. When she discovered a lack of stories about children dying from rare or incurable diseases geared toward children under 12, she set out to write one herself in an effort to help terminally ill children and their families with a story that they can relate to. Written with co-author Meaghann Weaver, a pediatric oncologist and former NCI fellow, Wiener shared “The Gift of Gerbert’s Feathers,” the beautiful story of a brave but sick gosling who comes to terms with dying, during the ceremony.
During the reading of names of the children who died over the past year, guests were asked to hang large, colored feathers in memory of the children on a branch and to light candles arranged beside a painting of migrating geese flying across the sky at sunset.
By the time the ceremony ended, the room was quiet again except for the audible sniffling from tears being shed in shared remembrance of those children who boldly journeyed into the unknown to help find new treatments and cures, even though their own lives could not be saved.
“Of course this work can be sad – If we didn’t feel sad at times, we should probably find another line of work,” Dr. Wiener, who also is a Children’s Inn trustee, reminded guests in her keynote address. “Above all else, we can all find that the most exquisite and intimate life experiences are those where we have been provided an opportunity to give to another human being, to support one another, and the strength to know when it is time to let go and say good-bye.”
“The Gift of Gerbert’s Feathers” will be available via Magination Press and major retailers in early 2020.