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TUESDAY, JUNE 10, 2014

34 years later, childs

dream still pushes dad
Staff Writer

Frank Defords reassuring

voice is familiar to many for his
sports commentary each
Wednesday on NPRs Morning
Edition. He is a senior contributing writer at Sports Illustrated, a commentator on HBOs
Real Sports With Bryant
Gumbel and the author of 17
books. Deford went multimedia
before it was journalisms
buzzword. The guys a machine
and a stunning and versatile
The book Alex: The Life of a
Child chronicles the life of
Frank and Carol Defords
daughter, Alex, and the familys
experience raising a child with cystic fibrosis. Alex died in
January 1980 at 8 years old. She was loved by many in her
short time in the world. With the help of her fathers
words, shes continued to have a big impact.
Deford never stopped fighting for Alex in the 34 years
since shes died. He became deeply involved with the
Cystic Fibrosis Foundation, serving for years as chair of
the organizations board of directors. He still serves in an
honorary capacity.
His daughter always wished for a cure. Thats my wish,
too. My son Eli, 1, has cystic fibrosis. I read the book as I
traveled to Washington, D.C., in April for a conference to
learn more about helping the cause to cure cystic fibrosis.
I caught up with Deford via email. Here is our Q&A:
Q: Something you mentioned that stuck with me
is your emphasis on asking Why in situations at
any hospital or clinic. You also emphasized how
important it is to remain vigilant and watchful as a
parent. You gave a terrible scenario in which your
daughters lung collapsed, and a young doctor refused to listen to her, putting her in great danger for
hours. Can you emphasize again Why ask the
doctor why? Do you feel it is still relevant today, so
many years after your daughters passing?
A: I think all of us are intimidated by doctors, for our
care is in their hands, and so few of us really understand medicine. That makes it very important to ask
questions, to probe, to let the doctor know that we are
paying attention. The good ones will appreciate your
curiosity and are delighted to answer you. The not-sogood ones deserve to be held to account.
Q: Alex always prayed to help the less fortunate.
With the adoption of your daughter Scarlet after
Alexs death, Alex got her prayer, to help a child
living under hard circumstances find a loving home.
Alex hasnt yet gotten her wish, which was to find a
cure for cystic fibrosis. How can we help Alex get
her wish to cure cystic fibrosis?
A: Simple: by volunteering and contributing to the
CF Foundation. When the cure comes, Im sure thats
where itll come from.
Q: Has grief for your daughter Alex changed over

A fathers story
Author Frank Deford is also a journalist. Many would recognize him for
his long-standing commentary on
NPRs Morning Edition.
Right away, I discover Defords experience with Alex is not sugar-coated
or romanticized. The little girl dies on
the first page. Then Deford takes us
I board the plane.
Alex died when her lungs stopped
working. She was scared and unable to
We take off.
The little girls death is made tens of
thousands of times worse by the fact
that, as you read about this childs life,
you fall in love with her. So much of
what Deford said about Alex reminded
me of my 4-year-old daughter, Laila,
who does not have CF. Alex loved telling jokes, wearing pretty dresses, being
silly, singing, dancing and acting.
Alexs sweet, strong spirit leaps off the
books pages. All that courage. That
inner strength her disease couldnt
penetrate it. She just gets to you.
Thats why it hurts so much to read
about the childs take on her own mortality. Alex knew she was going to die
Alex loved making joke messages
with her daddy on the answering machine. She loved to laugh, though she
tried not to laugh too hard, because it
made her cough. After making one
message with her dad, she said something like, Oh, my little daddy,
wouldnt this have been fun?
What she meant was wouldnt
this have been fun, if she were to live?
Wouldnt this have been fun? Life together. The good times she was going
to miss. That sweet little child knew
her time was fleeting.
That scene nearly does me in. Turbulence. Blinking. Looking at the
plane ceiling. Dont cry. Deep breath.
Whew. OK, moving on. Deford is a
stunning writer. His words make me
feel. Smile. Think think, dont waste
time. Find reasons to be happy. Those
words pull my heart through a paper
shredder. Just a few hours ago I could
never find the time to read. Now I cant

Learn to say no.
Learning how to decline a request is an important life skill. Many of us have a difficult time saying no, even when were overwhelmed with things
to do. We may say yes from a desire to please, but
in the end we often feel resentful, frustrated and
angry with ourselves. Remember that you have a
right to decline any request, even if its reasonable.
Try taking some time before you answer. Let
people know you need to think it over or check
with family or your boss.
Say Thanks for calling, and Im grateful you
thought of me, but I cant take on any more tasks.
Always remember: you are saying no to the task,
not rejecting the person. Its called self-care.




Frank Deford

the years, and if so, how?

A: Grief softens over time, but there is always some
that stays with you. And so, too, do the wonderful
memories of Alex.
Q: Have you ever worried that Alex would be too
associated with the tragedy of her death?
A: Actually, I find that most people find Alex as a symbol of strength and courage. I continue to meet people, 34
years after her death, who go out of their way to tell me
that she influenced their lives for the good.
Q: As you mention in your book, families can be
pulled apart by this disease. High divorce rates. Alcoholism. Depression all of it. Yet, your family
remained close and strong. What advice would you
give to other families dealing with cystic fibrosis?
A: Id be presumptuous to answer that. Some things
that work out cannot readily be explained, and they
dont necessarily have answers that apply to similar
Q. If, somehow, blogging existed in the 70s
through 1980, do you think you would you have tried
it out? Do you still keep journals, and if so, is that
what you prefer to document personal experience?
A: No, Id still prefer to have written a book about
Alex. As a matter of fact, the only journal I ever kept
was the one about Alex and (her brother) Christian in
those few years of her life.
Defords latest book is Over Time: My Life as a Sportswriter. Reporter Juliana
Keeping chronicles survival tales at hithisiseli.com. Follow her @julianakeeping and

CF: A legacy of courage, strength



Juliana Keeping chronicles
survival tales at hithisiseli.com.
Follow her @hithisiseli or
@julianakeeping on Twitter.

Donations to the Cystic Fibrosis Foundation Sooner
Chapter can be made online at
index.cfm or mailed to CF
Foundation Sooner Chapter,
Oklahoma City office, Bethany
Bank Tower, 2908 N Peniel
Ave., Suite 330, Bethany, OK

The CF Foundation Sooner Chapter: www.cff.org/
Cystic fibrosis: www.cff.org.

stop reading.

Facing reality
From Oklahoma City, I fly to Atlanta. The man sitting next to me asks
what I am reading. He recognizes Defords name on the cover.
Its a book about a little girl with
cystic fibrosis, I say. Alex. Mr. Defords daughter died at 8. Im actually
on my way to a conference for the Cystic Fibrosis Foundation, to learn about
how I can help. My son, Eli, has the
same disease. But, things are different
My voice cracks. I cant spit out a
sentence. The man looks away. Ive
gotten emotional, and the poor guy
only wanted to know what I was reading. I cant stand crying in public. I get
out of my seat and run to the bathroom, feeling embarrassed.
Day to day, I dont think about the
deadly part of CF. I prefer not to
confront it. What purpose would that
serve? The man had made an innocent
inquiry and somehow in a moment the
gravity of my sons disease just hit me

like it does from time to time. It hits me

that I am traveling far away from my
family to learn more about what I could
do to stop deadly, the thing I always
push out of my mind. In explaining the
book, I have to own up to the fact I am
on this airplane because I dont want
Eli to die young.
I return to my seat. The man has
plugged in his headphones and occupies himself with a magazine, mercifully. I close my eyes. We hit more turbulence and then land.
In Atlanta, I have about five minutes
to grab a slice of pizza, then Im back
on board, grabbing my connection to
Washington, D.C.

Closer than ever

Alex has a new white dress for Valentines Day. She is happy and laughing, but then she begins to cough. She
coughs blood all over her white dress
and shes horrified. Devastated. Then
she is standing up to a young doctor,
who told his cadre of charges her procedure was not painful. The little girl
yells that it is. That he shouldnt tell
people things that he doesnt know are
true. Her lung collapses in the hospital
on a separate occasion. She is alone;
another arrogant doctor refuses to believe her for six hours, during which
her life is at risk.
We are getting to the end. My God,
I can hardly stand it.
More turbulence. The plane Im
on is descending, and the little girl
with so much courage and strength is
dying. It is my worst nightmare, the
way that she goes.
I close the book, put my hoodie
over my head and sob in silence for a
half hour. People are looking. I dont
care any more.
Sometimes theres no way to avoid
making a scene.
Alex Deford, more than anything
else, wished for a cure for the terrible
disease that took her too soon.
Its not yet happened. We are closer than weve ever been.
Alex left a legacy of courage,
strength and hope. Alex: The Life of a
Child is a timeless story about love,
and Im so glad I read it. For Alex, for
Eli, for all of us who face this disease,
we have to cure cystic fibrosis.

Sunlight, fresh air, green trees an outdoor workout sounds like a vacation. And we promise that your
treadmill wont get offended if you ditch the incline
and hit a natural hill every once in awhile. Running,
biking or even bringing your dumbbells to your deck
does a body (and a mind) quite a bit of good. Here
are four reasons to feel the breeze on your face and
take your workout outdoors:
Improve mood: Feeling blue? Then go green.
Just five minutes of exercise in a green space
like a park can boost mood and self-esteem, according to researchers in the United Kingdom.
Bonus: Go blue, too! The biggest mental health
booster was found when the green space contained a lake or a river.
Natural caffeine: Swap your morning cup of
joe for a sunny sweat session. A study from the
University of Rochester found that just 20 minutes outside can have the same pick-me-up effect
as a cup of coffee. Put that $4 toward a new pair
of running shoes!
A free dose of Vitamin D: Vitamin D is important for bone health, cancer prevention, hormonal
problems and a strong immune system. Now get
this exercising in the great outdoors is an easy
way to get your Vitamin D for free. Experts suggest 10 minutes of unprotected sun three times a
week. Just make sure to apply that sunscreen at
minute 11.
Habit-maker: If you want to see physical results, consistency is the key. And an outdoor workout might make that easier. A 2011 survey found
that outdoor exercisers declared a greater intent
to repeat the activity at a later date than those
who only worked out inside.
Fit Tips are provided by Life Fitness, a leader in designing and
manufacturing high-quality exercise equipment for fitness facilities and
homes worldwide. For more information on Fit Tips and other fitness
advice and expertise visit www.lifefitness.com/blog.


Q: For what group in our society was the coming of the Rover safety bicycle of 1885 probably the greatest boon? The Starley & Sutton
Co. model had both wheels the same size, thus
offering the safest and most efficient combination for a bicycle.
A: Its invention casts a new light on the old quip
that a woman needs a man like a fish needs a
bicycle, says Eric Chaline in Fifty Machines That
Changed the Course of History. Ironically, the
safety bicycle (so-called because the riders feet
could reach the ground) helped create the emancipated new woman of the late 19th century. Victorian women constrained by a modest dress code
found it impossible to ride a penny-farthing with
its oversized front wheel, yet even in a floor-length
skirt, they had no problem with the safety bicycle.
Thus, the long fight for womens political and
social emancipation began when they took to the
streets on bicycles, giving them unprecedented
mobility, self-reliance and independence.
Standing out among her contemporaries was
Annie Kopchovsky (1870-1947), who, as Annie
Londonderry, in 1895 became the first woman to
cycle around the world, completing the trip in 15
Q: When you consider the law of large numbers, the improbability principle or the law
of combinations, its not surprising that some
truly quirky things happen with numbers, such
as one Israel state lottery picking 13, 14, 26, 32,
33, 36 on Sept. 21, 2010, and then again a few
weeks later on Oct. 16; or the same person winning the same big lottery more than once. Or,
what if you'd been Maureen Wilcox in 1980
when she bought tickets containing the winning numbers for both the Massachusetts State
Lottery and the Rhode Island Lottery?
A: Unfortunately for Ms. Wilcox, her ticket for
the Massachusetts Lottery held the winning number for the Rhode Island Lottery, and vice versa,
says David J. Hand in Never Say Never in Scientific American magazine. Obviously, matching a
ticket for one lottery with the outcome of the
draw for another wins you nothing apart from a
suspicion that the universe is making fun of you.
Q: For those who really love their tea, it can
become a narcotic need or even a sort of religious rite. Explain, please.
A: When 19th-century poet Percy Bysshe Shelley
was expelled from Oxford for writing a tract called
The Necessity of Atheism, he privately admitted
to being a theist, by which he meant being addicted to tea (French the), said Mark Forsyth in
The Horologicon: A Days Jaunt Through the Lost
Words of the English Language. Theism (or
tea-ism) became as popular a religion as England
has ever known. Or, as The Lancet put it in an
1886 article: America and England are the two
countries afflicted most with the maladies arising
from the excessive consumption of tea.
British servicemen of World War II would refer
to good strong tea as gunfire, in that it had the
same enlivening effect upon the senses as coming
under attack from the enemy.
Advises Forsyth: Avoid letting the tea steep too
long or it will be overdrawn and potty, that is,
tasting of the teapot. Ready now, grasp the handle
of the teapot (technically called the boul; also the
name for the little finger holes in scissors), then
pour and enjoy.
Send questions to brothers Bill and Rich Sones at strangetrue@cs.com.

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