Wednesday, March 7, 2012
A family's love lies at the heart of this gifted boy’s fight to survive. Born with a congenital heart defect that required surgery when he was a baby, Damon Weber lives a big life with spirit and independence that have always been a source of pride to his parents, Doron and Shealagh. But when Damon is diagnosed with a new illness as a teenager, his triumphant coming-of-age tale turns into a darker and more dramatic quest: his family’s race against time and a flawed heath care system.
Immortal Bird is a searing account of a father’s struggle to save his remarkable son, a story of a young boy’s passion for life, and a tribute to his family’s love. It is also a story of the perils of modern medicine and the redemptive power of art in the face of the unthinkable. -- Simon & Schuster
I honestly don't know what made me pick up IMMORTAL BIRD: A FAMILY MEMOIR by Doron Weber because normally I don't rush to read books that are this depressing. I think I read a few reviews talking about the strength of the family and the power of their story; and I guess I thought it might be inspirational. And this book about a father's devotion to his dying son was definitely inspirational, but it was also incredibly difficult for me to read.
Ultimately, I am glad that I read IMMORTAL BIRD even though it really was a nightmare scenario for any parent. To have a child with severe heart problems who battles a disease and eventually loses that battle is unfathomable to me. Of course, I was inspired by Damon because he was so strong and brave and an all-around great kid; however, as a parent, I could definitely relate to the author and his wife. They did everything humanly possible to save their son's life; and unfortunately, it was out of their hands. I don't know how you ever get over a loss like that, but I hope they find comfort in knowing that they did all they could.
I give the author a huge amount of credit for telling this story for a number of reasons. First of all, it couldn't have been an easy book to write. I can't even imagine reliving those dark days; however, I'm sure that it is somewhat therapeutic to pay tribute to your son and your entire family. Secondly, I think there were some valuable lessons about managing your own health care that came to light as a result of the care that Damon received towards the end of his life. This book is a reminder that no cares as much as we do about our loved ones and that doctors are far from perfect. And finally, I think by writing his family's story, Mr. Weber reminds us to never take anything for granted. Damon chose to live his short life to the fullest and I think we can all learn a lesson from him.
One thing that struck me as very interesting about IMMORTAL BIRD is that it was a story about a father's love of his son. While my husband and I dearly love our children, we are very different in how we show them and in how we parent. If I were in the same situation as Mr. Weber, I doubt that I would have been as strong as he was. I would have wanted to curl up and cry and I'm sure many of my hours would have been spent that way. I think my husband would have reacted more like the author because he is a man. I hate to stereotype and I'm only speaking about my situation, but I tend to complain and cry about things while my husband just wants to fix them. Mr. Doron wanted to fix his son and fortunately he was in a situation where he could do more than most. He had the resources and the contacts available to him that allowed him to make a difference in his son's health care.
It's incredibly difficult to say something negative about IMMORTAL BIRD and/or the author without sounding like a cold-hearted person, so I debated about whether to even mention this in my review. As I reading this book, I was extremely touched by the love and devotion that Mr. Weber shows to his son; and I have no doubt that Damon was a very special child. However, I sometimes felt as if Damon were so perfect that it distanced him from me. (OK I said it!) As I look back at my reaction, I have come to a conclusion. Of course, as a parent, Mr. Weber thinks his son was wonderful (as he should) and I can't fault him for wanting to share his specialness with others. But I think it's more than that too. Because of the constant battle and the eventual loss that Mr. Weber faced, he chooses to focus on the positive. He doesn't get caught up in all those everyday things that "normal" parents get upset about...and that just might be my biggest takeaway from this story.
IMMORTAL BIRD would be an interesting pick for a book club, but I would dare say that it wouldn't be a "fun" meeting. I know that my friends would have a very similar reaction to the book as I did, and I don't think most people even want to think about the horror that this family experienced. However, there are many lessons in this book and it does warrant some thought and discussion. There is a reading guide
It's not an upbeat book by any means, but I do recommend IMMORTAL BIRD. It's a beautiful tribute to a young man who was taken far before he should have.
Thanks to the publisher for providing a review copy of this book.