Immortal Bird by Doron Weber - BOOK REVIEW

Title:  Immortal Bird 
Author:  Doron Weber
Publisher:   Simon and Schuster
Release Date:  February 7, 2012
Hardcover, 351 pages
ISBN 10:    1451618069
ISBN 13:  9781451618068
The Book Depository / Amazon

February, 2012 Indie Next List

Goodreads description:

Damon Weber is a brilliant kid – a skilled actor and a natural leader at school. Born with a congenital heart defect that required surgery when he was a baby, Damon’s spirit and independence have always been a source of pride to his parents, Doron and Sheileagh, who vigilantly look for any signs of danger. As Damon continues to thrive socially and academically, he develops a dangerous heart condition that stunts his growth and saps his energy. Despite having the best doctors, his condition becomes increasingly serious, and the Weber family must make some difficult decisions.

Yet frequent medical check-ups can't keep Damon's spirit down. He proves to be a talent on stage, appears in David Milch’s HBO series Deadwood, and maintains an active social life, whenever he has the energy. Meanwhile, Doron searches relentlessly for answers about his son's condition, examining the latest research and consulting experts in a race against time for a solution.

Immortal Bird is a searing account of a father’s struggle against disease and bureaucracy – a moving story of science, health and love, and the redemptive power of art in the face of tragedy.

My Take: 

The title of this book is taken from Keats' "Ode to a Nightingale", which is appropriate, as this is a father's ode to his talented son which also includes excerpts from his son's blog.

Damon Weber is a smart, creative, funny teen who was born with a malformed heart that was corrected by surgery when he was young.   By the time he is 14, however, he is still only 5' 6" tall and not growing, having been diagnosed with PLE (a disease which causes protein not be kept in the body) at 13, the disease being a possible side effect of the heart surgeries he had as a toddler.  His parents, especially his father, research everything they can about the disease and, having the means to do so, explore as many feasible options outside of heart transplantation as possible in order to keep Damon with them.

As a parent, and knowing from the first pages of the novel how it was going to end, this was a sad read.  I could tell that the author tried his best to communicate the feeling of love he had for his son, and wanted to let the reader in on a child who was unmistakably a bright light in the world.  It was apparent that he tried his best to be fully informed, and also frustratingly obvious were the mistakes and inattention by medical staff as portrayed in these pages.  Having had my own battle with doctors brushing me off before my own son's diagnosis, I know how that feels, and it makes a parent angry.  It makes a parent angrier when the "cure" itself turns out to be worse than the disease, and due diligence is not applied in figuring out what the resulting illness actually IS (in this case, it should have been obvious to the doctors involved, but the initial prescribed treatment was the OPPOSITE of what should have been done).

To THIS reader, however, the telling often felt stiff, forced, and, at times, overly dramatic.  Every now and then, I caught a glimmer of something .. whether it be the dread of foreboding or the happiness at a triumph, but then the writing would go back to a somewhat superficial recounting.

I know that this must have been a difficult story to write, and I commend the author for this tribute to his son's spirit. 

QUOTES (from an ARC; may be different in final copy):

The world carries on as before.
But underneath my feet, deep cracks and fissures appear.  I shiver and hear someone who sounds suspiciously like myself begin to sob and scream.


I feel my wife's suffering more acutely than my own, because my powerful feelings for Damon have not yet developed - fatherhood remains largely an abstraction to me - and I don't understand that this little pale infant with his reddish tuft of hair will become the center of my life.

From Damon's blog:

Honestly I'll never understand how I got through the last 3 years as well as I did.  And now when I think of what I might have been able to do with those 3 years had it not been for PLE it makes me kinda sad.  I guess I never really accepted it or admitted it before but now it's suddenly sort of hit me; I had a disease and a bad one, one that could and did kill people and one that no one really knew anything definitive about and who could blem them.  About 10,000 people in America have3 had my operation (the original 1) and 10% of those get PLE that's not exactly much of a data base.  And one that could have eventually killed me and was weakening me day by day.

BOOK RATING:   3 out of 5 stars

BLOGGERS:  Have you reviewed this book? If so, please feel free to leave a link to your review in the comments section; I will also add your link to the body of my review.

Read an excerpt

BUY IT:  At Amazon, The Book Depository, through the publisher's website,  and through other on-and-off-line booksellers.

Disclosure:  I  received a  complimentary ARC of this title from the publisher through Shelf Awareness to facilitate my review.  No other compensation was received and I was not required to post a positive review.