Book World Live
Tuesday, March 7, 2006; 3:00 PM
James Reston, Jr. will be online Tuesday, March 7, at 3 p.m. ET to discuss "Fragile Innocence," his memoir of raising a brain-damaged daughter.
James Reston, Jr. is an acclaimed journalist and a historian known for his scholarship in ancient history.
Join Book World Live each Tuesday at 3 p.m. ET for a discussion based on a story or review in each Sunday's Book World section.
Washington DC: Yours is a wonderful story. I am wondering how Hillary is doing now and if any progress has been made to 'grow a kidney' for her.
James Reston, Jr.: After Hillary's kidney transplant three years ago, her life (and ours) was utterly transformed. She is now stable and reasonably healthy, though we still struggle to control her brain seizures which are still regular.
Growing a kidney for her is the promise of the future, but probably only if stem cell research can go forward unfettered.
Boston, Mass: Social workers told me that men in situations like this often opt for divorce. Any desire to try to escape your situation, either early on or later into it?
James Reston, Jr.: We were told when we entered into the darkest days of the early crisis that these situations take a tremendous toll on marriages, and that two things happen: either marriages split up or they get closer. Our marriage has sustained a great deal of strain, but I'm happy to say we fall into the 'getting closer' category.
California: I was curious if you've ever read any books by Dr. Thom Hartmann? He's an expert on
autism, and has written moving accounts of why people who are different are precious. BTW, he is the man who conceived of an alternative to right-wing radio, which promted the creation of Air America.
Any comments on how your daughter enlightened you in unforeseen ways?
James Reston, Jr.: I do not know Dr. Hartmann's work. But Hillary has taught us a great deal, and continues to teach, even though she has no words. One of the great revelations of our experience comes in the way a handicapped person can not only spread joy, but bring out the best in people. Those who have lost so much play a tremendously important role in our society.
In a simple fashion, is your family story one of turning liabilities into assets? How would you go about giving a few simple truths to your family story?
James Reston, Jr.: We endeavored to the best that we could for the hand that had been dealt to Hillary and to us. It was important to try not to lapse into despair, since that would have paralysed us and would not have been helpful to Hillary. Hillary's losses are profound, but the end is happy enough. She is alive, and stable, and most importantly, she provides us with great joy. That is an asset beyond description.
Philadelphia, Pa.: It was sad reading what happened to your daughter and how this has changed her life. I was surprised that your daughter Hillary's condition remains a mystery to medical experts. In your opinion, what are some of the best theories as to what happened?
James Reston, Jr.: As you'll see when you read the book, we were given a number of explanations, some of which were just general but complicated words like encephalitis (which just means brain disease) or stroke. The word 'stroke' too we later learned is just a general term and not a specific diagnosis. But that word has been the most useful, at least to the question our friends ask.
'What happened to your daughter when she was two years old?"
'Oh," we answer, "she had a stroke."
Arlington, Va: Was your daughter ever checked for Rett Syndrome? My grandaughter has it and some of your daughter's symptoms are similiar. 18 years ago it had not been diagnosed yet.
James Reston, Jr.: Yes, that syndrome was considered along the way. Hillary's symptoms are similar to a number of specific diagnoses, but none have covered her entire condition.
My heart goes out to you and wish you good luck.
Arlington, Va: Please tell us a bit more about Hillary's teenage years, and how she lived and what pleasure she took in life. I promise to buy and read the book, but know that I won't get to it until the end of this semester (i.e., late May).
Thanks so much.
James Reston, Jr.: Hillary's teenage years were largely focused on her kidney failure, since she was on dialysis for eight years (encompassing her teens). Dialysis replicates only 15% of normal kidney function,and so she clearly felt lousy all that time.
And yet she persisted, for she is one tough cookie. And we could tell pretty well what pleased her and what annoyed her. (in the later, mainly her daddy.)
Wahington, DC: What would, in your view, be the dammage that stem cell research and/or animal transplantation could entail if they were approved?
James Reston, Jr.: The proper spelling is: damage.
Takoma Park, Md: THANK you for this book...from what I've read of the review, I will swallow every word for our only child, now 20 has struggled with life. I'll leave it at that. My question is:How do you handle family members or friends who are afraid or can't comprehend what you deal with on a daily basis?Do you distance yourself from them?Do you ever try to explain? What words have helped?Thanks again,sherri
James Reston, Jr.: Dear Sherri, Bless you.
I have dealt with the problem of relations with others extensively in the book, and encourage you to look at the whole. It may help. I hope so. The truth is people who have not experienced what we experience can't possibly understand, and so it causes awkwardness. We went through a period of isolation from friends and even family. Sometimes, it takes finding someone who has also experienced personal pain.
Washington DC: I understand there are no public programs for people with Hillary's condition once they turn 18 so I am just curious how Hillary spends her days - what activities she enjoys and what support systems (if any)exist for you and your wife.
James Reston, Jr.: After 21 the handicapped end their entitlement to public education. Afterwards, they simply "qualify" for programs, but are not "entitled" to anything. There are a number of programs out there, public and private, but they vary greatly in their quality.
After 21, quality of life is the biggest challenge, and the struggles to provide it probably will never end.
Danbury, Conn: Our grandson almost a year old has Infantile Spasms, a rare type of epilepsy which can and usually does, lead to brain damage. At this point life is a series of vast changes, small ups and big downs. Hopes and fears. Is this what Hilary had? How did you cope in those early days of medical ignorance of what to do for the best?
James Reston, Jr.: Bless you and your family.
The early stage is probably the hardest when there is so much confusion, medically and emotionally, when the future is so unsure. Everyone, I'm afraid, has to cope in their own special way. Keep challenging your doctors not only to do their best medically, but to explain what is going on in simple, human terms that you can understand. We're 24 years into this process and still have our hopes and fears. Stay positive as you are able.
Bethesda, Md: We have a 17 year old daughter with disabilities that sound somewhat similar to your daughter's condition. We have had a very difficult time finding in home support. It is particularly difficult to find the right person who can pick up a 110 pound girl, but also deal with the female issues. Any suggestions?
James Reston, Jr.: Finding the right help is the key. We have been blessed by a series of wonderful helpers for Hillary over the years. There are truly heroic people with the biggest hearts around who work in this field.
Belgrade Serbia: Your book speaks to the power of love and the human will. Which relates to so many hardship around the world. Is there a particular strength you relied on? Courage, love, not wanting to give up, etc?
James Reston, Jr.: Courage, yes, but I never thought of it that way. You do what you have to do. Love certainly: that's the most important. And then in the end, a great deal of patience.
Arlington, Va: From the review, your book sounds fascinating. Thanks so much for addressing the issue of the value of the lives of the "disabled". I grew up with an autistic brother (now 44), and we as a family with limited economic resources, maybe by necessity because my parents simply did not have time to make a career of "fixing" him, always viewed him as an "add" to the family, rather than a "loss" if that makes sense. Now, as an adult, I see so many of my friends and acquaintances almost determined to find something wrong with theirs kids-ADHD, autism like symptoms, learning disabilities, etc.--that it seems inescapable that the kids will grow up thinking they are less than perfect, and who knows what the impact of childhood insecurity will be on their later years. What about our culture needs to change so that can we be more accepting of differences and grow to value the disabled and the different, especially when they are our children?
James Reston, Jr.: The attitude of the American culture toward the handicapped has definitely got to change more than it has. Yes, we have the accessible ramps and that kind of thing. But the impulse to shut the handicapped away, to be embarrassed by them, or even, occasionally, to make fun them is still there.
But it is also the culture of every individual, not just he society as a whole.
Williamsburg, Va: My family and I can relate so closely to your book. I have a sister who, as we put it, had a breakdown at the age of 12. She was a beautiful, normal girl who suddenly became confused and started acting abnormally. Well, almost 40 years later, we still have no answers as to what went wrong. My question is--have you ever had anyone from outside the family come in to help and give "respite"? My mother's health is failing and I feel that the time has come to get some help in the house.Thanks for writing this book and sharing your experience!
James Reston, Jr.: Respite is critically important. This is a tough job, and it's tiring. It's important to keep your strength up, and to get away. We lived for many years without being able to get away, and paid some consequences for it.
There are respite agencies out there. Take full advantage of them.
Arlington, Va.: As writers, we all arrive at times and places when we can sit
down and write the book that's been stored up in our heads.
Why now? What propelled you to sit down and write the
story, and aside from the personal piece, what was different
writing this book versus all the others you have penned?
Thanks for your time.
James Reston, Jr.: I have been writing books for 35 years, and I thought that I would not be true to my craft if at some point I didn't address Hillary's story. To do so became a compulsion. But as we writers know, just because you have experienced something sad or even dramatic doesn't mean you have a book.
In this case, there were two elements: the mystery of what happened to Hillary, and the quest for a kidney transplant. Only when after 8 years Hillary was transplanted, did I really think I had a book.
Washington, DC: My wife and I read the book review in the Washington Post this weekend and were very touched by your experience. The pastor at the church we have been attending in McLean has had a similar experience -- his daughter is 13 now, and it opened up entire new areas of ministry for him and the church. That would confirm the lessons it appears you and your wife have had to take from your suffering -- good seems to come, however painfully and grudgingly, from even the worst suffering. I intend to buy the book as a gift for my wife soon.Rick Cinquegrana
James Reston, Jr.: Hi Rick,
That's interesting, your minister's situation. We had the same experience with doctors. The doctors---and there were about five of them---who best served Hillary over the years were the ones who had had personal tragedy in their own lives.
Bethesda, Md: I look forward to reading your book because your journey describes the struggle my family has had providing care for our youngest of three children. Maintaining our sanity and sense of humor are critical for all of us to survive and thrive. Without sounding trite, I believe these special children teach us humility, patience and unconditional love, qualities that are sorely lacking in many relationships. It has introduced us to a group of people we would otherwise not know and enabled us to appreciate what life has to offer in all its different forms. Thank you for opening up and allowing others a glimpse at what your family has dealt with for these twenty plus years.
James Reston, Jr.: And thank you for all that. You say it beautifully,.
Chevy Chase, Md: Jim - Congratulations on the fine book review. What an adorable picture of Hilary! Wonder what she thinks of the book? Look forward to reading the book. When will you be reading and signing? Peggy
James Reston, Jr.: This book was only possible because Hillary has no language, can not read, and has no understanding of what I have done here. Hence, her privacy is not invaded, and thus, I felt liberated to treat her whole story without restraint and without worry that she would be upset.
Will be at the Barnes and NOble in Bethesda on March 30.
Woodbridge, Va: Hello. I am 26 years old and have had health problems similar to your daughters (ministrokes, seizures, developmental delays, and other neurological problems and other many other organs involved also affecting my muscles). It took 24 yrs to get a correct diagnosis of mitochondrial encephalomyopathy. I was wondering if this and other metabolic disorders had been looked into? I also look forward to reading your book- I want to eventually write my story and you writing your daughters has only encouraged me more. Bless you and your family.
James Reston, Jr.: Yes, your diagnosis has been fully considered in Hillary's case. Writing is difficult, especially if it is about yourself or your family. By all means, undertake it if you feel compelled to do so, and you will be gratified by the hard work. It may also be liberating. But don't undertake it unless you feel compelled to do so. There is no requirement here. Writing, when you really don't want to do it, is masochism.
Des Moines, Iowa: Nearly six years ago my wife survived a massive cerebral
hemmhorage from a burst aneurysm. Like your wife, I
bargained with God for my wife's life, and she literally came
back from the dead (flatlined EEG, on a respirator until family
members could arrive). I got what I bargained for, I
suppose--she's at home, but totally and permanently
disabled, with little functioning memory. But six years later I
find myself, at times, alternately regretting my bargain, and
then overwhelmed with guilt at my regret. Did you go
through that experience? And for how long?
James Reston, Jr.: We, in these situations, all make our bargains. And they are all crap shoots. If you read the book, you'll see that my wife makes her bargain with God. We are among the lucky ones. Our child survived; her care is manageable; she gives us joy and hopefully, a little wisdom. But we are intensely aware that there are a ton of people out there who have it far worse than us, whose bargains were harder or didn't turn out quite as well. My heartfelt best wishes to you.
Munich, Germany: With so many setbacks to recount, were there also positive moments when you felt that you and Hillary had achieved something?
James Reston, Jr.: We have achieved far more than we have lost. Indeed, I believe our care of Hillary is the best thing we've done in our lives. And we are proud of it.
Daytona, Fla: How did you handle the health insurance part of it, then and now? My son, who has Down Syndrome, is apparently ineligible for private insurance (much as I try) as I am self employed, and not eligible for any public programs because of my income...wonder if you had any luck there?
James Reston, Jr.: This is another aspect of the situation where we have been fortunate. My wife is employed at an institution with good insurance policy. Without that, we would have been lost, since as you know, this can cost tens of thousands of dollars a year. Had it only been me, a self-employed, independent writer, I'm not sure what could have been done. I'm sorry I can't be more helpful. Good luck to you.
Miami, Oklahoma: After adopting and raising three "normal" children, my wife and I became foster parents and the first child we received was a 20-month old girl who had had a stroke at birth, has CP, epilepsy, etc., etc. We did not think she would live through the first weekend...and I also knew that despite our ages (late 40s) we could never let her go. She is over 4 now, and doing things most folks never thought possible. She will never be normal as we think it, but I call her my broken angel...when she smiles and laughs the whole world is better no matter what has happened at work or whatever. But the battles to get assistance, to stay patient through all the therapy when the progress is so small...it takes a lot. Then I worry about if my wife and I cannot take care of her or die first...I guess that is the most pressing issue I have. I have never regretted keeping her for one minute.
James Reston, Jr.: You are a hero. This is truly doing the Lord's work. You can be tremendously proud, and I am proud of you.
Anonymous: Congratulations and admiration for telling your story so
beautifully by sharing yourself. Will you be reading and
signing the book soon and where?
What does Hilary think of the book?
James Reston, Jr.: In Tyson's Corner, Virginia, tomorrow.
Bethesda, Md. March 30.
St. Bartholomew's Church in New York, March 23
Des Moines and Iowa City, March 27.
Hillary is oblivious to her new-found fame.
Bethesda, Md: As a parent of a severely disabled child, I frequently get asked aren't you going to "put" him someplace as if there are places just waiting with their doors open to take him. We want to keep him as long as we can at home with in-home supports but we struggle with the long-term issue. How have you sought to address the question of what happens if Hillary outlives you?
James Reston, Jr.: This is the most profound of problems. Yes, we have been discussing that.
For those who don't know this situation, it comes as a huge surprise that parents like us fear when we will no longer be able to care for our special children.
Kensington, Md: I was so moved by your story and would like to help in some way either by volunteering or donating to an organization that helps people like Hillary. Are there any organizations that you can recommend?
James Reston, Jr.: There are a great number of organizations out there who serve the handicapped. They are populated by some of the most wonderful people you'll ever get to know. I encourage you to volunteer. These groups need a lot of help. You will not be sorry.
Takoma Park, Md.: Your story is so inspiring, as well as gut-wrenching. What was the impact on your other children of you and your wife having to spend so much time and emotional energy on Hillary?
James Reston, Jr.: The impact on the siblings of handicapped is a well-studied problem. It's important and difficult. Our two 'normal' children had many severe problems in their upbringing. They didn't ask for this, and I wouldn't have willed it on them or anyone.
But good news is that they are both deep and beautiful people in adulthood, with a great amount of wisdom for their experience.
Woodbridge, Va: I would like to go to one of your signings, when and where is the one in VA and MD? or where could i get that info? I wrote earlier about my condition and writing about it. I have been writing different things since i was 12 for enjoyment. Thats how it feels with if I wrote my own story. To let myself express myself and maybe to reach out to others in similar situations. Luckily wont be masocism to me lol. But know what you mean.
James Reston, Jr.: Tyson's Corner tomorrow.
James Reston, Jr.: Many thanks to all who have communicated such profound feelings.
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