Any life path--the growing, the stretching, the choices we make--is a journey. Having cystic fibrosis or having a child with cystic fibrosis, colors that journey. In fact, it affects the lives of everyone living in the family. There are great times along this journey, moments of crystal clear vision where the good days (or moments) are so much better than for others who don't walk this path simply because these joyous moments can be appreciated within a larger context. There are other times when we feel lost, we need more help and more support, and we're not sure where to turn for ideas. I've compiled this short book review for the harder days.
For adults, the book of interest is titled Examining Your Doctor: A Patient's Guide to Avoiding Harmful Medical Care, by Timothy B. McCall, M.D.(a Birch Lane Press Book, Carol Publishing Group, N.Y.). Dr. McCall, writing from the physician's perspective, discusses motivational factors that may contribute to decisions that doctors make but are not necessarily in the patients' best interests. In an age of such tremendous change in American medical practices, McCall honestly and forthrightly portrays the stresses influencing today's medical practitioner. With this in mind, the author encourages attitude changes in the consumers of health care, urging a healthy skepticism toward your physician and his/her advice, and trains the reader in evaluating his or her current health care. The book is easy-to-read, yet sophisticated, and very thorough.
For children, the first two books come from the Center for Attitudinal Healing in Marin County, California, founded by Gerald G. Jampolsky, M.D., (both are published by Celestial Arts, Berkeley, CA). The first book, There is a Rainbow Behind Every Dark Cloud focuses on both the experience of being ill and the choices one has to help one's self. Each chapter has a helpful introduction of one page or less which precedes a series of inspiring drawings and comments by children of all ages who are ill. The second book, Straight from the Siblings: Another Look at the Rainbow, is modeled after the first book, but is written and drawn by children (aged eight to 10) who have a sibling with a life threatening illness. This book feels a little more intimate because it gives the name and age of the child commenting. Also it stands alone in that it addresses a heretofore unacknowledged audience: there is very little available in the world for siblings of the chronically ill. Children featured in both of these books are struggling with a variety of diseases, most prominent among them being cancer. While cancer differs from CF in many ways, what is important in these books is the commonality of our feelings in dealing with illness. I suggest having these books on hand, reading them ahead of your child and then when the time is right (after a bad illness or during a period of brief depression) pulling them out and looking over them together. Perhaps you might want to suggest that your child draw his or her own artwork to add to the book. They will serve as wonderful avenues for discussion about life, illness, healing and death.
How it Feels to Fight for Your Life, by Jill Krementz (Fireside Books, Simon & Schuster), an award winning book published in 1989, is still noteworthy. Ms. Krementz has collected together 14 children who have a variety of different chronic illnesses (CF, asthma and diabetes are included) and they each tell their story. Their accounts are honest and unsentimental and the children possess a rare acceptance of their lives that is very inspirational. Though there are a few youngsters under 12, most of the stories are about teenagers between 12 and 16. Because the book includes a child with CF, but does not solely focus on CF, it gives our young readers with CF a chance to see the struggles of others in relationship to their own struggle. This is really an excellent book for the 8-14 crowd.
Finally, I am most excited about a beautiful new book by Joshua Grishaw, My Heart is Full of Wishes (Raintree, Steck-Vaughn Publishers, Austin, TX). Joshua, who has cystic fibrosis, wrote this book two years ago when he was in fifth grade for a 1994 Publish-a-Book-Contest. He talks with a rare openness and honesty about his hopes, dreams and fears and about living with CF. His imagination is wonderful as are the illustrations (exquisitely drawn by Lane Yerkes). Young children (under 10) will love this book, but the older kids and adults will love reading it to them. Enjoy!
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