As anyone with a chronic illness knows, hope can sometimes be hard to come by. For parents and caregivers of children with serious illness, there can be a real struggle to move beyond one’s own grief, fear, and suffering to see what hope means for these kids.
Duane Bidwell, a scholar, minister, and former hospital chaplain who has struggled with serious illness himself, spent time with 48 chronically ill children in dialysis units and transplant clinics around the United States. Chronically ill kids, he found, don’t adhere to popular or scholarly understandings of hope. They experience hope as a sense of well-being in the present, not a promise of future improvement, an ability to set goals, or the absence of illness and suffering. With this mindset, these kids suggest a new understanding of pediatric hope, saying hope becomes concrete when they (1) realize community, (2) claim power, (3) attend to Spirit, (4) choose trust, and (5) maintain identity.
Offering textured portraits of children with end-stage kidney disease, After the Worst Day Ever illustrates in their words how sick children experience, maintain, and turn toward hope even when illness cannot be cured and severely limits quality of life. Their insights reveal how the adults in a sick child’s world—parents, chaplains, medical professionals, teachers, and others—can nurture hope. They also shift our understanding of hope from an internal resource located “inside” an individual to a shared, communal experience that becomes a resource for individuals.
Rich and moving, Bidwell’s work helps us imagine anew what it means to sustain hope despite inescapable suffering and the limits of chronic illness.