Fall 2002 ~ Newsletter
Hope: A National Perspective
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"The Extraordinary Journey"
the author of a book about a life with CF gives a perspective on hope
by Terry and Don Detrich
You've just been told your child has cystic fibrosis. We've been there. We know the gut-wrenching, heart-breaking pangs of what-should-have-been and may never be again. We recognized the unfathomable shock - the sudden, unexpected and permanent change to a family's existence. The day our daughter, Lo, was diagnosed marked a point in our lives that will be even more memorable September 11th, 2001. We had done everything we could to provide a loving and secure environment in which to raise two children. We were young and ready to meet the demands of parenting - or so we thought. But we had never considered the fact that Cystic Fibrosis was going to be one of the challenges.
Writing The Spirit of Lo - An Ordinary Family's Extraordinary Journey, forced us to scrutinize the impact that CF had on each one of us. It was obvious that the journey was full of turmoil and trouble. But as we sifted through the memories, hindsight enabled us to focus on new, unexpected perspectives. It began a process that continues today. While Lo's diagnosis forever ended our ability to take life for granted, it enabled us to appreciate the smallest of moments. The anticipation of the "once-in-a-lifetime" opportunity such as a vacation has been equally fulfilled by the intimacy of watching a movie together or laughing uproariously around the dinner table at the telling of the day's events. We have learned to appreciate the importance of embracing moments as they happen rather than depending upon anticipating some future event. Life is what happens in between, we realize. It is the extent to which we recognize emotions, senses, and "just being" that qualifies how rich we are. Without CF's presence in our lives, we may never have understood this perspective.
Hindsight has also revealed the power of finding the courage to hope. Hope is the antidote to the desperation parents often feel when their children are diagnosed. For us, raising funds for medical research has provided a sense of hopefulness that supplements our careful attention to Lo's care. Scientists have unraveled many of the mysteries of CF during these past eighteen years. We believe that the next eighteen years will bring new treatments and perhaps, even a cure. Because of this, we don't think you will have to look very far to find the courage to hope.
Our daughter is now eighteen years old. She is a blonde-haired, blue-eyed beauty. She loves to climb mountains, to snow ski, to go out to lunch with friends, to write poetry, to cook, and to have long conversations with her boyfriend. She wakes up every day with the attitude that it is going to be a great one - all that in spite of her diseased lungs, her chronic osteo-arthritis, her constant cough. Is this attitude in spite of - or because of - cystic fibrosis? Who is to say? Perhaps it truly is a choice that you - as the parents and individuals who will most influence your child's life - now have to make as you chart your course. We grieve with you that your child has CF. But, we can also assure you, that you have begun a journey, which promises to be extraordinary. And we will be there for you, along the way.