Jo, thank you for writing this post about a very difficult topic. I am sorry to learn of the passing of this mother and her beloved son. As a genetic counselor focusing on working with families who have children with genetic conditions, some life limiting, I know the struggle and challenges they face including the anticipatory grief and sometimes the inevitable prolonged or complicated grief. The resources you share above may help others. You parents are not alone, in your disease specific communities, in the larger Rare community and for some as bereaved parents. You are seen and heard and understood. Mary-Frances Garber, MS, CGC www.listeningreflectinghealing.com
Jo, thank you for writing this post about a very difficult topic. I am sorry to learn of the passing of this mother and her beloved son. As a genetic counselor focusing on working with families who have children with genetic conditions, some life limiting, I know the struggle and challenges they face including the anticipatory grief and sometimes the inevitable prolonged or complicated grief. The resources you share above may help others. You parents are not alone, in your disease specific communities, in the larger Rare community and for some as bereaved parents. You are seen and heard and understood. Mary-Frances Garber, MS, CGC www.listeningreflectinghealing.com