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http://www.npr.org/templates/story/story.php?storyId=5220119

 

A Daughter's 'Fragile Innocence'

 

by Renée Montagne

 

Morning Edition, March 14, 2006 · At 18 months old, Hillary Reston

was struck by a high fever that stunted her healthy development

forever. In a new book, Fragile Innocence, her father, James Reston

Jr., describes how her family rallied around Hillary, seeking medical

answers and a way to improve her quality of life.

 

Hillary's fever was originally diagnosed as being a viral condition.

Nothing could be done except to monitor the fever and give Hillary

aspirin and baths to cool her. The fever continued for days and

Hillary's mother, Denise, grew more and more frantic, Reston recalls.

 

On the fifth day, the fever broke and Hillary seemed OK. But a few

months later, their vibrant, verbal child began behaving in strange

and even dangerous ways.

 

" She would walk off the end of a picnic table or just fall down for

no apparent reason, " Reston says.

 

Then Hillary began to have seizures.

 

" We knew at that point that there was something terribly, terribly

wrong, " Reston says.

 

Hillary's parents saw her vocabulary of about 200 words " drop away

one by one by one in the months after that first seizure, " Reston

says. " Then it was only three words. Then it was just sounds. "

 

Hillary is now 24, but she is about the size of a 10-year-old. Her

life has included a kidney disease so severe that it took a

transplant to save her. But she also has a diploma from a special

school, a paying job shredding paper for the local school board and a

love of bowling.

 

Reston describes his daughter as " extremely annoying at times … a

very strong-minded person. But it has occurred to me many times that

Hillary is some sort of angel because she is a total innocent. She is

very fragile at the same time, and hence the title of this book. "

 

Reston is a writer and historian whose works have included Warriors

of God, The Last Apocalyps and Galileo: A Life. His wife, Denise

Leary, is a corporate lawyer at NPR.

 

Excerpt from 'Fragile Innocence'

by James Reston Jr.

 

This is a book about the first twenty-one years of a child named

Hillary. It tells of her battle to live and our family's struggle to

help her survive as best we could, after an evil and still

unidentified force robbed her of her language at age two, hurtled her

into a seemingly endless cycle of brain storms, destroyed her

kidneys, and took her to the very brink of death. That is the first

half of the story, when life itself was at stake.

 

The second half is different. While the threats to her life never

completely vanished, the latter half is about the process of coming

to grips with the damage that had been wreaked and the quest to solve

the mystery of what had happened. And it is about the heroic efforts

of many people, professionals and friends and a few strangers, to

help her reach her potential. Ultimately, it is the story of her

deliverance and redemption. And so this is memoir, biography,

mystery, and drama, all centered in a remarkable person who cannot

talk or read or understand language, but who has moved and touched

almost everyone she has ever met.

 

As an innocent devastated by pure chance, Hillary has shown us the

very meaning of courage. Without words and frequently with very

little physical strength, she has demonstrated a strength of

character and an eloquence that many a saint or silver-tongued

spellbinder could envy. When the smallest gesture of sensitivity and

awareness was shown her, she responded by spreading more love than

anyone I have ever known. In Hillary charisma is personified.

 

The compulsion to write her story has been strong within me for some

time. Other writers I admire, among them Reynolds Price, William

Styron, Kenzaburo Oe, and Norman Cousins, have written wonderfully

and usefully about grave crises in their personal lives, and so it

seemed necessary at some point that I should attempt to do so as

well. But the moment had to be right. And the story itself needed

some sense of completion. There was never any assurance that

Hillary's early life would ever find that resolution, or that we

would ever ultimately come to terms with it. But happy events in the

summer of 2002 changed that, and completed the circle. Those events,

in a far-off and wondrous place called Iowa City,

 

Iowa, allowed me, as it is sometimes said, to close the book.

 

If I was ready, I could only proceed with the help and sufferance of

my wife, Denise Leary. At the most basic level, the mother always

suffers and grieves and remembers more than the father. For many of

those twenty-one years, I was often the observer high above the fray

while Denise, down in the trenches, engaged in the real combat. She

had as many or more professional challenges in her career as a lawyer

as I have had as a writer. Regardless . . . the mother has no relief,

no refuge, no escape. Denise, along with Hillary, is the hero of the

story. And to write Hillary's story, I was the observer twice over,

for I was the man with the crowbar, as we forced open those misshapen

boxes that had long since been closed and put away. For Denise, that

was difficult, to say the least.

 

In the early years of Hillary's illness, we often wondered, angrily,

why our child had been singled out, and why we, far from perfect

perhaps, but good and decent people, had been cursed. We demanded an

answer about the randomness of tragedy. Why us? we asked as if

rationality guides the universe. We demanded to comprehend the

incomprehensible.

 

There was precious little to read to impart greater wisdom. And so

this book is offered for whatever it may provide to others in similar

or worse situations. And the fact is that there are many, many

families in far worse situations, families for whom there is no happy

ending, no resolution, no redemption. There are many children with

far worse infirmities and many families with far fewer advantages

than Hillary and we have had. In the Dickensian charnel houses of our

own county we have seen scores and scores of them. From these

children the common instinct is to avert one's eyes. In Hillary's

imperfections, by contrast to other families, we have been blessed.

To those families and to those children, we offer our love and

admiration, and our hope that by reading this they may find some

profit.

 

Not everything about Hillary's life is told herein. Certain

confidences are protected. That so much could be told is a factor of

Hillary's own situation. I have not invaded her privacy, nor

undermined her dignity as a human being, for she lives in the moment,

on the evidence of her eyes about what transpires before her. She is

an innocent, without embarrassment or guilt or remorse or resentment.

I like to think that she would be pleased to have her story told.

 

Beyond its human qualities, her story should be told for an

additional reason, one that I came to realize only gradually over the

years. Her case personalizes some of the most daunting ethical issues

of medicine that face us today: stem cell research, animal organ

transplantation, the politics of human organ donation, genetic

manipulation, diagnosis with the human genome map, and reproductive

and therapeutic cloning. These issues are seldom considered from the

vantage point of the " consumer. " Hillary is a potential consumer—and

beneficiary—of it all.

 

We sit now by a favorite stream in the Blue Ridge. She plies her

joyous pastime of throwing sticks into the spring-swollen water of

Fiery Run, turning to smile and squint her pleasure at me. To my

eyes, she is lovely, and the scene is worthy of Wyeth. Her throaty,

tremulous sounds are loud, but their loudness does not offend the

countryside. Their warble reminds me of a distant night heron in the

far woods. Healthy and solid at last, rosycheeked and bright-eyed,

her life force is evident. She is making up for lost time.

 

Fiery Run, Virginia

 

May 2005

 

Excerpted from Fragile Innocence: A Father's Memoir of His Daughter's

Courageous Journey © Copyright 2006 by James Reston Jr. Published by

Harmony Books.

 

.....posted:bob