This article relies on auto-ethnography to make sense of the role a closed Facebook group can play in the life of a parent with a child who has rare genetic syndrome, CHARGE. The article will use the concept of affordances as a general framework to make sense of the activities in the Facebook group. For Norman “affordances refer to the potential actions that are possible, but these are easily discoverable only if they are perceivable: Perceived affordances”, thus the Facebook group becomes a sum of imagined possibilities. Previous research has identified the following affordances of social media: identity, flexibility, structure, narration and adaptation. These five affordances will be used to structure the discussion around the parenting experiences.