It is hard to be the constant bearer of hard things. Hard to tell him about yet another appointment. Hard to tell him about another assessment. Hard to tell him about a new diagnosis. Hard to tell him about, perhaps, another intervention. Hard to tell him it’s an early pick up day, because a change in routine is hard. You do not look for more things, but you follow up. You do all you can now, in the hope of making life easier for him down the road. Nobody said parenting a child with cortical visual impairment (CVI) is easy. Nobody said it today. Continue reading “Hard things”
We don’t always talk about it but the truth is that parenting a child with a disability challenges who we are. It challenges us as the parents that we would like to be, the parents that we planned to be. In so many ways, parenting a child with a disability challenges our very nature, whoever we have come to be.
Continue reading “Parenting a child with a disability challenges who we are”
September is the first official CVI Awareness Month. Cortical visual impairment (CVI) has been the leading cause of visual impairment in children in the U.S. since the 1990s. CVI is the public health crisis that you haven’t heard of. For parents of children with cortical visual impairment, every day – every medical appointment, every school meeting, every therapy appointment, every inquiry from a well meaning, random stranger – is about CVI Awareness. Continue reading “September is CVI Awareness Month”