signup
for email updates
Directory
Our
Archive: 2001-2004
Cover
Art Archive
Search
|
Alex: The Life of a
Child:
Sacred
Moments | by Frank Deford
Provided
to Edge Life by Phil Bolsta
Frank Deford, the author of 14 books, is widely regarded as the consummate sportswriter
of his era, most notably for his award-winning work in Sports Illustrated magazine.
He also appears regularly on National Public Radio's "Morning Edition"
and on HBO's "RealSports." His 15th novel,The Old Ball Game, about Christy
Mathewson and John McGraw and baseball at the turn of the century, will be published
in April. His daughter's struggle with cystic fibrosis, which is poignantly documented
in his book, Alex: The Life Of A Child, and the movie of the same name, led him to
serve as national chairman of the Cystic Fibrosis Foundation for 15 years. He is
now chairman emeritus of that organization.
An excerpt from Alex: The Life of a Child:
Now that I was there, they were ready to make the chest incision and insert the
tube. The first time Alex had a collapsed lung -- a pneumothorax, it was called --
she had been given a large dosage of painkiller, and it really knocked her out; she
slept for hours and was groggy many more. Thereafter, even though she was so frightened
of pain, she seemed all the more frightened that she might never wake up, and so
she told the doctors only to give her a local.
We did not know it at the time, but this would be the last occasion when Alex would
-- could -- have the tubes inserted. [My wife] Carol and I, and Alex, feared that
it would keep happening, again and again, the final cruel indignity, but what we
did not know was that, after this time, [Dr.] Tom Dolan doubted that her body could
stand the trauma of another cut. There was so little left of her.
And so I carried Alex into her treatment room. By then she had prepared herself fairly
well, but as soon as she saw that stark table where she was to lie and receive her
shot and her incision, she stiffened and was the little girl again. "No, not
yet! Not yet!" she cried, and she clung to me as tight as she ever had.
I remember noticing that both nurses there turned away from us at that moment, because,
for all they might see, day after day in a hospital, there was such an awful intimacy
to Alex's gesture that they could not bear to intrude on us. I only held Alex and
tried to comfort her more.
And, in time, when she had composed herself, she said, "All right. I'm ready
now." And so she was.
So I started to lay her down where they would cut her open. And in that moment, I
could not hold back any longer; one tear fell from all those welling in my eyes.
And Alex saw it, saw my face as I bent to put her down. Softer, but urgently, she
cried out, "Wait!" We all thought she was only delaying the operation again,
but instead, so gently, so dearly, she reached up, and with an angel's touch, swept
the tear from my face.
I will never know such sweetness again in all my life.
"Oh, my little Daddy, I'm so sorry," is what she said.
One nurse turned and bowed her head and began to sob. The other could not even stay
in the room. She ran off to compose herself. It was some time before we could get
going again.
That was one of the most powerful of all the moments I shared with Alex. She was
in pain and she knew there was going to be even more pain. And yet, she was more
concerned about me. "Oh, my little Daddy, don't worry about me." That was
superhuman. We tend to use that word -- superhuman -- when somebody has done something
marvelous, but it can also relate to something spiritual, beyond normal human capacity.
And, in my mind, in that moment, Alex was about as far as you could get above human.
And it was not naiveté. It was not childhood ignorance. She was old enough
to know what was going on. It was just selflessness.
Obviously, I think that Alex was particularly something special, but I have met enough
other children with cystic fibrosis and other diseases to know that a great many
of them take on a certain maturity, that they are somehow imbued with a spirit that
can infuse us. It's probably because they're around adults more and because they
have to deal with a grown-up situation. Yet, they can drift back rather quickly and
become child-like again if you put them in a childhood situation. It's almost a bifurcated
kind of life. Put Alex in a peaceful setting with a friend and dolls, and she was
as childish as anybody could be.
But put her under pressure and those qualities, that wisdom, that maturity, came
into play. Those who are most frail, most vulnerable, can sometimes exude the greatest
strength. It may be a God-given thing they need in order to get by. It's also a
kind of armor they put on to help the people around them because there's nothing
worse than seeing your child in pain and dying. Here she was so young, so wasted
away at the end, yet there was a power to her, a living spirituality that I experienced
when I was with her that was stronger than anything I felt after she was gone.
It's important to note that an extraordinarily high number of marriages break up
when a child becomes sick and dies. It's because both the mother and the father need
the same thing -- and they can't get it from each other. It's really hard and you
can't imagine what it's like until you've been put through that fire. I think that,
instinctively, Alex tried to help us get through those difficult times.
Alex died in January and that summer my wife suggested to me that we adopt. I should
add that, every night, when Alex would say her prayers, she would always end up asking
God to help the poor children in other countries and to help bring them to the United
States. Where this came from, I don't know.
Another excerpt:
I knew in my heart that I was cool to the idea, and as long as I was, it was wrong
to pursue it. I tried to figure out why I was so reluctant to consider adoption,
and finally one day, when I was out at the grave discussing this with Alex, I understood:
I didn't think it would be fair to Alex. She was my daughter, my child. She had been
the one born to grow up in our house, in our family. Bad enough that she should be
sick and die; now we should haul someone else in, some stranger, to take her place?
To me, that would be the ultimate inequity, the final injustice. I just couldn't
bring another child in to replace Alex, and, finally, I told Carol that, directly.
That was the end of it. I was sorry, but I couldn't do that.
Carol didn't say anything. I went on. Somehow, worst of all, I said, was the way
Alex loved little babies, and she would love a little baby girl the most of all.
So here she not only would be replaced by a little girl -- that was bad enough --
but also she would be the one of us who couldn't enjoy the little girl. That made
it crueler still.
Carol just listened to me. It was a lovely summer evening, and we were sitting out
on the patio, having a drink. [Our son] Chris was off somewhere in the neighborhood,
playing ball. This is the way it always had been. He would go off, but Alex would
get all dressed up in her summer finery, snap on a hundredweight of assorted costume
jewelry, and come out and have a Coke with us. Sometimes she would put on her Chinese
lounging pajamas and act particularly grown-up. It would be fairly soon after her
evening therapy, and she probably wouldn't have to cough unless something made her
laugh really hard.
"I'm sorry," I said to Carol. "Do you understand? I just can't do
that to Alex."
"You know," Carol said, "if we did get a baby -- if --"
"Carol, you heard what I said."
"Just listen to me. If we did get a baby, you know we could never get one in
the States, and it would have to come from some country way out of the way."
"I know that," I said. "A lot of them come from South America now."
"Some very poor country," Carol said, and I nodded. Then suddenly, she
reached over and took my hand in hers. "Do you remember Alex's prayer, what
she said every night?"
"Sure I do."
"You remember the part she made up herself, the part she'd always say: 'And
God, please take care of our country, and bring some of the poor people to our country,
and make the other countries rich like us.'" There were tears in my eyes even
before Carol had finished. A baby would be an answer to Alex's prayer as much as
it would be our new child.
Indeed, we did adopt a little girl from the Philippines. Scarlet is 22 now and graduated
from college last year. She's an artist. It's almost mystical and magical all the
things that allowed us to adopt her. There were so many hurdles, none of which we
should have gotten by. It was almost as if Alex was pulling the strings from heaven.
I hate to be corny, but you almost had to think that because so many things had to
fall into place. The most dramatic thing that happened was that the first family
that the child was offered to turned her down, because she was a girl and they wanted
a boy. That would've ended it right there. And there were all these other obstacles
that should've prevented it so that you had to think there was divine guidance. And
that Alex had some role in it to help the family -- not only to help this little
girl but to help our family stay together. You could say it was a spiritual experience,
but I'd like to think it was even something beyond that.
One more thing. Alex always called me, "my little Daddy." It was very appropriate
because the tables were often reversed. It almost had that upside-down flavor of
her being the parent and me being the child. It's curious but I, too, have a genetic
lung condition. It's not cystic fibrosis but I may have to eventually deal with some
of the same challenges that she dealt with so magnificently. I just know that whenever
my time comes, I will be so ashamed of myself unless I can be as courageous as she
was.
Phil
Bolsta, a freelance writer, lives in Rogers, Minn. Phil can be reached at (763) 315-1130
or at philb@impella.net.
Copyright
© 2005 Frank Deford. All rights reserved. |
| February 2005 |
|
|
