A Holy Mess of a Story: Maternal Reflections on Caregiving, Chaos, and Intellectual Disability

Abstract

Abstract Drawing on Frank’s illness narratives, the mother of a profoundly disabled son argues that Vanier and Nouwen’s descriptions of caregiving conform to the socially mandated quest narrative requiring stories of triumph. Their stories of spiritual growth have become a master text colonizing the experiences of mothers caring for children with intellectual disabilities, particularly among faith communities. Rather than a journey of spiritual growth, research indicates that the lives of mothers often resemble a chaos narrative of spiritual confusion, paradoxically fused with joy. Providing effective spiritual care requires that faith communities honor anti-narratives of caregiving chaos.