It is one thing to talk about what the symptoms of a rare disorder are, or its treatment, or the lifestyle changes it can produce. It is another thing entirely to live with the disorder, or learn that a loved one is affected. These books show us the intimate details of life with a rare disorder, including the intense emotions, the often difficult treatments, and attitudes towards the disabled.
1. Tuesdays With Morrie: An Old Man, Young Man & Life's Greatest Lesson
Sportswriter and author Mitch Albom spends his Tuesdays with his former college professor, Morrie Schwartz. Morrie is dying of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). Morrie's reflections on life and his insights into its meanings help Mitch learn the lesson that money and fame are not what's important. (Made into a 1999 TV movie starring Jack Lemmon and Hank Azaria.)
2. Babyface
Like all parents, author Jeanne McDermott anxiously awaited the arrival of her second son. But when Nathaniel is born with Apert syndrome, a craniofacial condition that causes disfigurement, McDermott must confront her own and society's ideas of perfection, wholeness, and beauty. She deals with her fears for her son, his surgeries, and comes to realize that love can truly overcome any difficulty.
3. My Journey With Jake: A Memoir of Parenting and Disability
At first, doctors don't know why Jake is so ill. Soon author Miriam Edelson learns the answer: her son has lissencephaly, a brain disorder. Edelson chronicles Jake's difficult medical condition and her struggles to negotiate the best medical care for him. This book is a moving personal account of the reality of life with a medically fragile child.4. Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic
Author Martha Beck and her husband John learn that their unborn child has Down syndrome. They believe strongly that the child, whom they name Adam, should be born. Beck writes about her pregnancy, her feelings throughout, and Adam's birth and infancy. Both she and her husband go through significant life changes as a result of this difficult, yet ultimately wonderful, experience.