“I’m his Mum and it is My Job to Keep him Safe”: Mothering a Child Living with Facial Eye Disfigurement

Abstract Mothering a child who lives with disability, or congenital facial condition can impact quality of life. This appertains to relationships, isolation, and feelings exclusion, result in ongoing vigilance, grief, may be addressed via faith future hope. In this IPA study we explore the lived experience non-facially disfigured mother mothering her Living Facial Eye Disfigurement (LwFED). Semi-structured interviews were used collect rich data which analysed reveal emergent overarching themes. We found that our participant is constantly vigilant response son’s blindness disfigurement. impacts his schooling relationships. Isolation all facets life including seeking respite, exhaustion, She acknowledges grief chronic sorrow. As mother, she encounters comments stares from strangers social situations. Our uses strong attempt find balance envisage for son. offer narrative one LwFED. do not draw generalisations but suggest resonances experiences others. recommend further research, advocacy professional support families society change culture.