Title: Facing Severe Chronic Disease in Childhood
Category: Child Care
The real key to facing a severe chronic childhood disease like cystic fibrosis is to empower the child to believe that they can be as normal as possible. It's vital to allow them to go to school and participate in sports, music, the arts and any and all activities which they can at least partially keep up with. By doing this, the child maximizes the fullness of their life without feeling sorry for himself and withering away because of overprotection and a negative mind set. A good example of this attitude was displayed by a patient of mine who died just recently. Her name was Yvette Sandoz and she survived her disease for 34-1/2 years. She was certainly one of the oldest cystic fibrosis patients in the country today and I believe a large part of her success was the fact that she did live a remarkably full life. She attended college at USL, taught school for several years, traveled, and stayed active with her family and friends up to the last few days of her life. Her family is commended for giving her a great belief in herself and most especially a tremendous loving support which made her want to keep living those last few tough years. She fought to continue sharing memories, joy and love with her entire family and many close friends.
Days before her death, Yvette wrote a beautiful poem in her journal which expresses her courage, strength, determination and unselfishness. She wrote:
Lord, please let me not become discontented.
Grant me acceptance graciously.
Help me to live one day as I can.
Let me not be a burden more than I am.
Bless my family and friends.
Yvette Marie Sandoz
Another great example of the kind of parenting needed to raise CF kids is displayed by Ricky and Sonia Briggs in Lafayette, Louisiana. Both of their children Ricky Jr. and Amanda, have cystic fibrosis but are developing so close to normal that you cannot tell by looking at them that they even have cystic fibrosis unless you hear them cough and choke occasionally. I think the lesson that the Briggs and Yvette taught me is that it is possible to handle any disease, no matter how dread or chronic, if you just keep the right attitude. Live one day at a time with good communication and support from friends and family. Work with your physician and all of the other medical and social support systems you have available to you. I encourage this attitude for anybody with any chronic disease and recommend reading: Anatomy of an Illness and Headfirst, The Biology of Hope by Norman Cousins and also Quantum Healing by Depak Chopra, M.D. and also Life, Hope and Healing by Bernie S. Seigal, M.D.