Jeremy Libon was born with a three-chambered heart. Doctors told Jeremy’s parents he would have to undergo a series of operations that would give him a 50 percent chance of living until the age of two. Not only did Jeremy survive—he went on to lead a fulfilling and vibrant life until his death, just before his nineteenth birthday. An expert at making the best of bad situations, Jeremy decided to create a survival guide to help other children cope with their own illnesses. He started writing while he was in the hospital and continued to add to the book right up until his death. After Jeremy’s death, his mother, father, and brother added their own perspectives, creating a book aimed at helping families deal with the challenges of living with a critically ill family member. Offering practical suggestions for parents about how to advocate for their child in the hospital, this book also contains important insights on family dynamics and shifting roles. Part memoir and part self-help book, Jeremy’s Hospital Survival Guide is an invaluable resource for anyone looking for a model of how a family can band together and weather one of the most devastating ordeals imaginable. "This book is a biography and a love story about an extraordinary young man named Jeremy. Throughout his life of illness upon illness, he took on the mantle of teacher to his family, and his doctors and nurses. And now his parents have given us the gift of having Jeremy be a teacher to all of us. This little treasure was written by his wise and insightful psychologist parents with a very poignant essay by his older brother. But this book goes well beyong biography. This is a must read for parents and families who have a child with a severe chronic illness. We are taught how to navigate hospitals and medical visits among other things. We are given the who's who in hospitals and how to have our voices heard. And as psychologists, they guide us through all of the intense emotions any family feels when a loved one is so ill. Like I said, a gift. Thank you Jeremy and thanks to his family." - Dan Gottlieb, Ph.D., Psychologist, NPR Radio Host, Author, www.DrDanGottlieb.com "Among all of life's occasions, the birth of a child is simultaneously one of the most joyful and frightening. How to reconcile the responsibility for a life yet lived? Add to that, the uncertainty that accompanies a sick child, especially a really sich child, and one gets to meet Jeremy Libon and his extraordinarily resilient family - travelers on a path not chosen, but walked with an accumulation of grit, anger, humor, advocacy, dignity and wisdom - all of which are indispensable in the journey through the maze of hospital health care. Their story is the book that should sit on every family's hospital nightstand; cover worn, coffee stained, pages earmarked, notes scribbled in the margins - reminders of those who've ventured before. In that regard, like an intimate Atlas, the family's corageous and honest account shold be given to any family who is about to share their circumstance. A distribution that also should be accompanied by making [Jeremy's Hospital Survival Guide] required reading for every hospital physician, nurse administrator and care team. To all who read this essential book - a deep gratitud to Gail, David, Adam and Jeremy." - Jay Lappin, MSW, LCSW "A posthumous reconstruction offers a valiant young patient's guide to dealing with hospital stays. Jeremy Libon, the central figure and inspiration for this short debut book complied by his family, was born with a congenital heart defect that led his doctors to warn that his odds of living even to the age of 2 were only 50-50. It turned out he lived until April 2010, dying at the age of 18, and in that time he demonstrated both an unquenchable spirit of optimism and a savvy, pragmatic knowledge of the hospital world through countless stays under doctors' care. The segment of the book actually authored by Jeremy is blunt about the drawback of hospital stays, detailing annoyances like being woken up round the clock for vitals testing, IV changing, and frequent taking of blood. He even addresses the dismal experience of being admitted to the hospital for the first place. His short segment also provides upbeat advice about reclaiming your life once you return from a hospital stay: showering the clinical smells off your skin and hair, and taking it easy ("There is nothing wrong with taking a nap during the day, no matter how old you are"). His section of the book is followed by remembrances of him by his brother, his father, and, in the most moving and practical-minded account, his mother. She continues the advice-giving theme of Jeremy's section, talking to readers about tricks to stave off waiting-room boredom, and ways to navigate hospital regulations about visitors and family members sleeping in the building. Parents of severely ill children should find her advice valuable on subjects ranging from the power o