Preface from the book:
Soul Survivor: Raising a Child with Cerebral Palsy
|I chose to write this book for three reasons: to bring attention
to the never ending effects peoples' lives and energies have on others; to illustrate what my husband and I accomplished
through home care; and, most of all, to prove how our physically and mentally challenged son, Jeffrey, benefited
from the provision of consistent patience and love.
I wanted to help other parents of disabled children and their children. Truthfully, I never fully comprehended the cost to me. The privacy of our daily life had to become public if Jeffrey's story and mine were to be told in detail. Also, I never realized how difficult it would be to write about my husband, Jeffrey's father, and neither did I understand the painful cost of truth and objectivity. I have even had to accept that there may be some details, especially about my feelings, that Junior may never have heard before. The door to our private life is now ajar forever.
Every mother knows more about her child than anyone else. I believe parents often hold the answers to children's problems, and I am convinced that parents get more results than many professionals.
I never planned to write a book in my lifetime. Of course, I never knew I would have a disabled child and keep him at home, either. There was little encouragement and few incentives at that time to keep a disabled child at home and as for a manual or any written advice on how to deal with the problems facing parents raising a child with cerebral palsy, there was absolutely nothing!
Many years have passed. I am now older, wiser and more accepting. The difficulty with acceptance and anger that once raged within me have simmered down.
What I am about to tell you will show you that a disabled child can be brought up at home and that he/she can be brought to an improved state of health through the methods and techniques we used. Some were taught to us by professionals, and some we figured out for ourselves, through trial and error.
I wrote this book because of a desire to help other families in situations like ours. It would give me great joy to hear that this book will help at least one other family. I needed, I think, to be convinced that my life had been worthwhile, that it counted for something, and could mean something to somebody outside our immediate family and friends.
I believe with all my heart, that people should not let themselves be defeated by the cares and difficulties which they meet in life. They are not so much difficulties as challenges. I believe you can rise above any obstacle that seems to threaten your well being.
I have attempted to answer the question of what I would have done if Jeffrey had been placed in an institution. Would I be guilt ridden, wondering what I would do with my life?
When we are no longer here to take care of Jeffrey I know that someone else will be here for him.
Jeffrey's probable life span has never been speculated on by any of the medical people we have been in contact with. Considering how little real stress he is subjected to, I can predict confidently that he will live a long life. At present, he his a healthy, disabled young adult.
I have also asked myself what I would have done if Jordon, Jeffrey's twin, had lived and been disabled as well. And I know that I would have done whatever I could for as long as I could. Everything happens for a reason.
I hope this book will encourage more parents to consider the option of keeping their disabled child at home.