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Below are some articles and books that may help you cope with living with CF. They are also good tools to share with family and friends who may not understand what you are feeling and experiencing with CF.

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The Spirit of Lo  
by Terry and Don Detrich
 
From the back cover: "An ordinary family is faced with an extraordinary challenge, a child with cystic fibrosis. This is their story, rich and moving, as they laugh and cry and learn and grow. Their love, faith and commitment to each other carry them through battles with depression, anger, despair and the ravages of the disease as they join a race with death for a cure. What emerges is The Spirit of Lo which enables the family and their community to face each new day of life's dance on the edge of mortality."
 
This book is available from Mind Matters Publishers.

Welcome To Holland
by
Emily Perl Kingsley

©1987 by Emily Perl Kingsley. All rights reserved.  Reprinted by permission of the author.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"
Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a
different
place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever,
ever
  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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***All information on CFOrlando.org is for educational or entertainment purposes only. For specific medical advice, diagnoses, and treatment, consult your doctor.