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

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