Book notes: Fragile Innocence by James Reston Jr

I was reading A Daughter's 'Fragile Innocence' on National Public Radio's website, about a recently released book by James Reston Jr. It didn't seem to be NPR's regular fare, somehow. It's about his daughter, who became horribly ill as a toddler and has been brain damaged since. I was amazed because it read like so many posts I've seen by the parents of children with severe disability, who find blessings they didn't expect to find. (See here and here for links to some of the more recent.) That this man faced challenges he didn't expect, and rose to the challenges, and loves his daughter just as she is comes shining through. So far, so good.

But this being NPR, I kept waiting for the other shoe to drop. Sure enough, in the excerpt, along with all the prose about the amazing amount of love spread by Hillary Reston is the assertion that this girl puts a human face on the need for stem cell research and other controversial medical experiments, like animal organ transplants, etc. Hmmm. The NPR article and excerpt didn't specify which type of stem cell work, not that I could find, anyway. When it isn't specified, and I'm on a liberal leaning site, I have a nasty habit of assuming the worst until I find out otherwise. So I went to Barnes & Noble to read the write-ups there, looking for clues. The publisher's note danced around it, but the Publishers Weekly review mentioned embryonic stem cell research specifically. Sigh. It figures.

Overall, otherwise, it sounds like a worthwhile and probably inspiring read, celebrating a life that some people these days would like to sweep aside as not worthy.

From the Kirkus Review (via Barnes & Noble):

...Though Hillary lived, she sustained severe brain damage, losing her ability to speak. Here, Reston chronicles two decades of family life. Gradually, he and his wife, Denise, move from tortured self-pity to an absolute adoration of Hillary and an understanding that she is wonderful just as she is. Hillary's older siblings emerge as heroes, though near the end of the book (and none too soon) Reston reflects on the ways each of his older children has been shaped, and perhaps a bit scarred, by growing up in such stressful circumstances. There is real polemic threaded through this memoir-an insistence that disabled, retarded or handicapped children's lives matter just as much as everyone else's. (If you imagine that no one would say otherwise in this politically correct age, think again; sometimes even Hillary's physicians suggest that, well, if her kidney failure kills her, maybe everyone will be better off.)...

The author and I disagree on embryonic stem cell research and maybe some of the other medical experiments he seems to want to champion, but I am celebrating the fact that a writer who appears to be highly regarded in circles other than my own is speaking out for the value of life of the disabled and retarded among us, and also that left-leaning media is giving him air time and column space to promote that.

The NPR article is followed by a long list of links for medical, legal and other web resources. I haven't checked these out yet, but this is NPR, so expect a slightly different list than I'd compile ;-).

For the information available at Barnes & Noble, click on the book cover:


Fragile Innocence: A Father's Memoir of His Daughter's Courageous Journey

There must be more on this book out there. Hang on as your blog hostess searches...

There is another excerpt from the book at MSNBC/Newsweek (Feb. 7, 2006) -- in the health section. The NPR article, by the way, was listed under "children's health." (Can you imagine John Gunther's memoir Death Be Not Proud being listed under a Health heading? Are these people trying to tell me something about the book, or is this just the way they think about anything with hospital visits in it?)

OK, here's another Newsweek entry, also Feb. 7, also under health, but this is an interview of James Reston by Jennifer Barrett. Pretty interesting.

There must be something more than this, though...

Ah, here we go: The Demands of Love, by reviewer Suki Casanave (Washington Post, March 5, 2005, Page BW01). This is unexpected:

..."In the early years," Reston writes, "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.... We demanded to comprehend the incomprehensible." Meanwhile, the burden of managing Hillary's complicated care while still trying to provide a semblance of normal life for their other two children was a daily challenge. Their lives became a saga of doctor visits, medical jargon and complex drug regimens. Through it all, they lived with a persistent sense of loss.

A turning point came one night in the hospital, when 4-year-old Hillary lay near death. On top of everything else she had suffered, there was a problem with her kidneys, and her lungs had suddenly collapsed. Doctors predicted she would be gone within hours. Desperate, Leary climbed into the hospital bed with her daughter, settling in among the tangle of ICU wires. She held Hillary, caressed her, spoke in her ear -- and made a bargain with a God whom she doubted: She promised to "never, never again measure the losses ... only the gains. But let Hillary live."

This plea marked a new beginning in the journey of loving Hillary. From this moment, Reston suggests, the realization of how much they had took center stage in their lives, even in the midst of what felt like ongoing tragedy...

For more on Reston and his books, see restonbooks.com.