Childhood Worldings of Brittle Bone Disease: A Portrait in 5 Triptych Research Poem

This paper offers a collection of found poems offering insights into representative worlds of children living with dis/abilities, chronic hospitalizations, and the ethical dilemmas surrounding their perioperative care. The collection represents the sum tota poetic crystallization of a multiyear ethnography focused on the ethical experiences of the childhood osteogenesis imperfecta community as encountered in a specialized North American pediatric OI clinic. The collection deliberately bridges multiple separate (yet deeply connected) worlds of children, clinicians, and family members to reveal their interdependence and yet preserve each individual’s distinct viewpoints.