Living With Cystic Fibrosis by John E. Bonfadini, Ed.D.,
Professor, George Mason University
John E. Bonfadini
A Familys Challenge
Every month thousands of children complete the miracle of life and are born into this
world. The families who receive these precious gifts are all hoping for the same outcome,
the birth of a son or daughter whos healthy, intelligent, and beautiful. In most
cases their wishes are granted. Maybe their child isnt the most beautiful, as
measured by some beauty pageant standards; or a child may not pass standardized tests with
the highest scores; but most parents are grateful if their child doesnt have any
major health problems outside the normal childhood maladies. On rare occasions something
goes wrong, and children are brought onto this earth with a problem that can test the
faith of all of us. Such was the case with the recent birth of my granddaughter Rachel,
who came onto this earth January 4th with cystic fibrosis.
I can remember the commercials with football star Boomer Esiason talking about his son
Gunther who has CF, but the advertisement just didnt hit home until last year when I
had my first personal encounter with a person who had cystic fibrosis. Mary Bergeres
(Northern Virginia Electric Cooperatives government relations liaison) 26- year-old
son Jon Capps succumbed to the disease, and I was one of many who wondered why a life
should be taken at such a young age. It never occurred to me at the time that the disease
would also play an important role in my familys future. Rachel Will is my daughter
Lisas fifth child. Four years ago she gave birth to a beautiful little girl named
Madi whos time on this earth was cut short. She was born with an atresia (blockage)
of the intestinal track. The problem is somewhat common and operations to repair the
blockage are usually successful. Madi remained in the hospital for 6 weeks only to have
the surgery rupture, resulting in her death. We now believe that Madi, too, had cystic
fibrosis, which contributed to the defective bowel, and was not diagnosed at the time.
Rachels birth should never have happened, according to doctors. After Madis
birth they informed my daughter that her reproductive tract was damaged and she would be
unable to have any more children. Rachel proved them wrong. She overcame many obstacles to
enter this world, and we believe there is a special purpose behind her birth.
Cystic fibrosis is an inherited disorder that affects the way salt and water move into
and out of the bodys cells. The most damaging effects are the development of thick
mucus, which affects the lungs and digestive tracks. Both parents must have the defective
gene for a child to be born with the disease. More than 10 million Americans (1 in 31) are
symptom-less carriers of the defective CF gene. In cases where both parents have the
defective gene, the probability is one in four that a child will be born with CF. The
statistics show that one in every 2,500 live babies will have CF. Its impossible to
predict how long a single patient will live. Science has made great strides in the
identification of the defective gene, and new treatments of the symptoms have increased
the expected average survival age to 40. Some children are lost at an early age, but the
future looks bright since the defective gene has been identified, which may lead to a cure
that addresses the defect itself, rather than just treating the secondary causes of CF.
The effort to find a cure, as with other diseases, requires the support of the general
public. This article is not an effort to request support for one disease over another, but
more to remind all of us how fragile and valuable each life is. Im providing the
following story to illustrate this point.
A philosophy professor stood before his class and had some items in front of him.
When class began, wordlessly he picked up a large empty mayonnaise jar and proceeded to
fill it with rocks rocks about 2 inches in diameter. He then asked the students if
the jar was full. They agreed that it was.
So the professor then picked up a box of pebbles and poured them into the jar. He shook
the jar lightly. The pebbles, of course, rolled into the open areas between the rocks. The
students laughed. Again, he asked the students if the jar was full. They agreed that it
The professor picked up a box of sand and poured it into the jar. Of course, the sand
filled up everything else. "Now," said the professor, "I want you to
recognize that this is your life. The rocks are the important things - your
marriage, your health, your children, your love of God - anything that is so
important to you that you would be nearly destroyed if it were lost. The pebbles are the
other things that matter, like your job, your house, your car. The sand is everything
else. The small stuff. If you put the sand into the jar first, there is no room for the
pebbles or the rocks." The same goes for your life. If you spend all your time and
energy on the small stuff, you will never have room for the things that are really
important to you. Pay attention to the things that are critical to your happiness. Play
with your children. Take time to get medical checkups. Take your wife out dancing. There
will always be time to go to work, wax the car, give a dinner party, and fix the disposal.
Take care of the rocks first ... the things that really matter. Set your priorities. The
rest is just sand.
Obviously, there are
at least two sides to every issue. Do you have a different view? This column is meant to
provoke thought, so keep sending comments. Each one is read with the utmost interest. Send
e-mail to: email@example.com, or send written
responses to the editor. Mail will be forwarded to the author.
When a child like Rachel comes to us, we soon realize the value of the
"rocks." Rachel is going to provide us with an opportunity to focus our future
efforts on the more important things in life. In my writings Ive tried to emphasize
the rocks in education, and not the sand, as represented by items like SOL testing. My
hope is that we will constantly remind ourselves to prioritize our lives, to deal with the
items that matter the most.
Mary Bergere is having a Spaghetti Dinner and Silent Auction fundraiser to support the
Cystic Fibrosis Foundation on March 30, 2001, at the American Legion Hall, 9918 Cockrell
Road, Manassas, VA. Cost for adults is $10; children 2-12, $5; and under 2, free. If you
need more information, call Karen Fink toll-free at 1-877-657-8444 x18. If you wish to
contribute and cannot attend, send donations to Mary Bergere, Northern Virginia Electric
Cooperative, 10323 Lomond Drive, P.O. Box 2710, Manassas, VA 22110-2710. Those of you who
would like to learn more about the Cystic Fibrosis Foundation, can get additional
information on their Internet site at www.cff.org.
Send donations to: Cystic Fibrosis Foundation
Attn: Communications Department
6931 Arlington Road
Bethesda, MD 20814