Extraordinary/Ordinary Life

An Extraordinary Ordinary Life: Insights from Parenting a Disabled Child explores the eventful life of Curtis, born with a rare partial chromosome deletion, as experienced by his mother, Lucy.These stories and reflections are drawn from 50 years of parenting, preserved in notebooks, diaries, scrapbooks and art therapy journals. Like a spiral, the book centers on the role of the parent or caregiver, then looks outward to the child, the family, and to educational, medical, and other organizations in the community. All are involved in the complex process of providing services for the disabled child's special needs.Lucy offers suggestions and lessons learned as well as the mistakes, problems, and fears she faced. Her parenting role developed over time, to become a team coordinator with the many individuals and organizations providing care for Curtis. This way of coping has worked for her, her son, and her family.Lucy discovered that her drawings helped her to express some of the frightening and frustrating aspects of parenting. She pairs them with her story to better describe an incident or process of decision-making.This story is about one extraordinary young man named Curtis, but it is also a story about choosing a balance in life; about choosing joy and appreciating the small details.