Parents and family members of children with chronic or terminal illnesses need special support, advice and direction. These books can help you come to terms with tragedy, make meaningful contact with medical professionals, and provide your child and his or her friends and siblings with the care and compassion they need during a difficult time.

1. Parenting Children With Health Issues

It's bad enough when misbehavior involves tantrums and lying and disrespect. When it involves skipping medication and avoiding treatments, it reaches a whole new degree of difficulty. The normal rules of Love and Logic parenting get tweaked here to accommodate the heightened stakes that come with chronic illness, and empower parents to create kids who can really take care of themselves.More »

2. Optimizing Care for Young Children With Special Health Care Needs

If you're up for a challenging read that's more technical than personal, written more for professionals than parents, this collection of essays holds some interesting thoughts about parents' perception of the health-care system and what doctors and insurers can do to provide better, more efficient, and more humane care. You'll just have to keep your eyes from crossing when you hit some of those passages full of dry statistics and medical terms.More »

3. Tiny Titan

To raise a family of 11 kids, many with significant special-needs, Ann Yurcek's had to learn how to stretch a dollar and get maximum value out of every acquisition. That same multitasking applies to her book, which offers at least four fascinating tales for the price of one, including the title tale of Becca, born with Noonan syndrome and holding tenaciously to life despite dire predictions and medical mismanagement.More »

4. Easy for You to Say: Q&As for Teens Living With Chronic Illness or Disability

Not for the faint of heart, this book is all about giving unflinchingly frank replies to the kinds of questions teens are embarrassed to ask their parents (and parents, all too often, are embarrassed to answer).More »

5. The Elephant in the Playroom

Parents share their heartfelt and inspirational stories about raising children with a wide variety of special needs. Browse through and you're likely to find one that speaks straight to you, and for you.More »

6. The Power of the Powerless

The Power of the Powerless grew out of an essay that received wide publication in the '80s. It made the papers again during the recent debate over euthanasia and persistent vegetative states. The book expands on the story of de Vinck's brother Oliver, who lived to the age of 33 without ever being able to see, hear, move or interact, but inspired in those who knew or heard of him an appreciation for the value of all life.More »

7. Shelter from the Storm

Parents of children with life-threatening conditions need all the help and good advice they can get, especially since they often don't get enough from health-care professionals. This book makes a worthy attempt at filling that gap.More »

8. Married With Special-Needs Children

It's commonly thought that a high percentage of marriages of parents with special-needs children end in divorce, but this book proposes that it's not necessarily so -- and certainly doesn't have to be. Without minimizing the difficulties of nurturing a marriage while nurturing a highly needy child, the authors point out ways to sustain and strengthen the ties of love, not just of duty, that bind spouses together. It's an encouraging, even inspirational, read.More »

9. Brothers and Sisters

There's no doubt that the needs of siblings of children with disabilities are many and undervalued, and a book that will help parents nurture and honor every one of their children is something we desperately require. This book isn't it, but it's a start, and one that offers food for thought.More »

10. Waiting With Gabriel: A Story of Cherishing a Baby's Brief Life

When Amy Kuebelbeck was 5-1/2 months pregnant, the child she was carrying was diagnosed with hypoplastic left heart syndrome, a condition in which the left side of the heart does not develop. This moving memoir tells of the choices she and her husband made to spare their child painful medical procedures and to celebrate the life he had, however brief.More »