I am going to give you three reasons to read this book. An introspective exploration of a mother and child in equal parts heartwarming, tragic and often humorous and optimistic. The reader gets to see Jeni and Mattie through birthdays, interviews, surgeries, summer camp and beachside chats on the pier. The main point of the narrative was not two people with disabilities (dysautonomic mytochondrial myopathy) coming to terms with their condition or trying to "fit in" with the healthy majority like we have seen in so many cases, but to foster their own tribe of loyal and responsible friends that supported them in every way. Even the doctors and fellow patients in Mattie's hospitals become part of the Stepanek's family community.

1. Jeni Stepanek - A courageous, loving and humorous woman and mother of 4 children, Katie, Stevie, Jamie and Mattie. She instilled her son Mattie with values that shaped his character and career as a peace advocate and author. After Mattie's passing in 2004 she has continued his work and serves as a mother figure and a leader to her entire community, not only local friends, but international friends as well. From her, I learned how important it is to find good friends that fully embrace every aspect of you and your life.

(Chapter 3 Pumpkin Season Page 57).

"From there my friendship with Sandy grew. It wasn't just that we were both studying for advanced degrees, and it wasn't just that we both had less than ideal marriages that eventually ended in complicated divorce cases. For me it was that, unlike so many other people, Sandy didn't try to swoop in and make things all better like a hero, and she didn't run when my children died.
It's extremely lonely being the mother of dying children. You can't share any of the normal milestones, the normal sense of community with other mothers. And people either want to solve the problem, which they can't or they want to leave when the situation becomes too difficult. It's not out of callousness. It's out of pain; watching children die is hard. But Sandy tried to neither fix nor flee; she just wanted to be my friend. And she helped in very real ways."

2. Mattie J.T. Stepanek - A boy wise beyond his years, but also sentimental with a crafty sense of humor. I was often laughing at some of Mattie's antics and words (which I won't spoil, please read him yourself). A strong intellectual and playful child, he met with presidents, poets and actors. He lived a full life with all the 14 years that he had. He touched the lives of everyone that knew him.

(Chapter 7 Mosaic of Gifts Page 112)

"When Shelly brought the tapes to Chicago, she managed to convince the Oprah Winfrey Show staff that Mattie's segment needed to be more than how his disability felt. She told them she had been struck by how an eleven-year-old placed a higher priority on being a father someday and on relationships than on guns, cars, or the typical fantasies of a young boy. She that she went to our apartment to get "What is it like to suffer, to have your dying wishes granted?" and came back with "What is it like to be a peacemaker?"

3. Heartsongs - Unlike other medical tragedies like A Walk to Remember or My Sister's Keeper, it doesn't gloss over the difficulties of living with a terminal condition. The Stepaneks are "inspiring" but not only because they kept fighting to survive everyday. Rather, they are inspiring because they strive to enjoy a normal experience of life in between frequent trips to the hospital. They manage to reconcile their unique circumstances with the day to day aspects of living. Jeni's recollections of Mattie's life are interspersed with family photos and verses from his Heartsongs poetry. This remarkable memoir is a story that is not to be missed.