The first time I read about Cystic Fibrosis, I was pregnant with my first born child. It was 1986 and I was huge. I usually enjoyed relaxing my hulking shape in a sunny doctor’s waiting room, killing time reading. Since there were no National Geographics or Time, I grabbed a ladies journal and flipped past the multitude of recipes to find myself riveted by the trials and tribulations of a parent raising a child with Cystic Fibrosis. The child in the story died at the age of 8 from her CF.
At this point I had very little contact with children. My own baby was not yet born and my world centered around my husband and my little sister who was 7 years old at the time. I was crushed to imagine this father’s heartbreak…his daughter was only my little sister Boo’s age!
I read about the father in the story having to help loosen the phlegm in his daughter’s chest with cupped hands. It sounded like a traumatic experience. Cystic Fibrosis causes an excess of phlegm in the lungs. In the article the father talked about how hard it was to pound on her back and chest rhythmically every morning and evening in order to make the likelihood of her living another day a probability. Some days his daughter would beg him not to but he knew her life depended on it so he always followed through. He was shouldered with the responsibility since his wife did not have the physical strength to loosen up as much as he could…..and the writer carefully explained how this procedure went on for years.
I sat reading the article in the doctor’s office, crying at my own inability to really be a good parent. This guy had the right stuff. How was I ever going to cope with such life issues? I knew I was embarking on the most important job of my life, being a mother, but I knew full well that I was woefully inadequate compared to this guy. My husband then, Gordon and I were already questioning our ability to really be grownups, (a sentiment we STILL feel almost daily!) and I knew that this was a touching reminder of our shortcomings. I knew neither of us had the steel to be able to ignore any child’s whining, how were we going to be able to make sure we gave the children what they needed instead of what they wanted? If Gordon’s daughter begged for him to stop in this case, he would have quit hands down and so would I…we are that kind of folk.
The projected life expectancy in 1955 for a baby born with CF was 5 years old. By the 60’s that figure was moved up to under10 years of age. By 1981 the figure had reached the age of 20 and in 1985 life expectancy reached 25 years of age. In 2004 life expectancy reached the mid-30’s.
Fundraising and research has changed this dramatically. Advances are made every year and I have been watching these events unfold in a highly personal way. I have a young friend with CF. His name is Zen. I saw him at parties and being a kid person I watched his exuberance with a smile. He is funny and sweet like any child. His eyes light up when he is getting away with something. He now has a little brother that he dotes on at family functions. One of my favorite memories of him at these parties was when we were at a small park in
He endlessly road around a small blacktop area on a little bike….around and
around…his face beaming. Santa Cruz
I had known him for over a year without realizing he had Cystic Fibrosis since his family is so upbeat and fun. They focus on the positive so much that no one had mentioned it at all.
I wondered if his father had to hit his chest with cupped hands to loosen the phlegm in his chest….and I wondered how long he would live. Thanks to advances in research and innovation Zen wears a little vibrating vest that accomplishes some of what the thumpings had done to loosen it…and my son said Zen watches TV while he wears it before bed. I am afraid to ask if they still need to repeatedly hit his chest to give him optimum chances to survive the night. I do know that his parents are the best they can be to him so whatever they are doing it is going to make sure Zen stays Zen.
They have a walk that they seem to be key components of and I was only too glad to walk for Zen. If money is what has caused these advances in life expectancy then I am on board. I have several T Shirts with the label ZenWalkers that I had been wearing as night shirts.
I have a job this year that sometimes matches donations to charities like this that I can go to and beg for funds. It has to be local though. So my Zen family set up a team for me in
. Our walk in Tuolumne
County Tuolumne County
was done before I moved back home though back in April…actually the local CF
walk was done while I was in
with my Miss Kimberley. Wales
I guess the bottom line is that I am asking for walkers to join my team and for donations to help increase the life span of Zen and all those like him. Right now it is 37 years. It is only in a few days away so my goals will be small…but if I can make even a couple of hundred dollars it really can make a big difference.
I will be walking the
September 15, 2012. I will be walking 2 miles starting at 9 am. I might be
alone but I will be in spirit walking with any who are willing to donate via
the CF Foundations website. I gladly
welcome your well wishes and company if you can. Sonora
Thank you for your interest in my goings on…..
Further Cystic Fibrosis information-
Deford Frank, Alex: The Life of a Child, A famous sportswriter’s true story of his own daughter who grappled with CF.