Wednesday, March 28, 2012

Immortal Love

Read Charlotte Canelli's column in the March 30 edition of the Norwood Transcript and Bulletin or listen to the podcast on SoundCloud. Podcasts are archived on the Voices from the Library page of the library website. From the Library - Immortal Love by Charlotte Canelli

Reading reviews and choosing both fiction and non-fiction books for our library, I often place a book on hold months before it is published. And sometimes I am puzzled when the book arrives on my desk not quite remembering just why it had piqued my interest.

This past winter I placed a hold on the book “Immortal Bird” written by Doron Weber, a program director at the non-profit Alfred P. Sloan Foundation in New York City. Skimming the back cover, I realized why I had reserved Weber’s book which chronicles his “struggle to save his remarkable son”, Damon, who was born with a congenital heart defect.

This is a story that I knew personally and similar to one that I, too, had experienced. I knew I must read it, if only for cathartic reasons. “Immortal Bird” sat on my bedside table for nearly a week before I dared open its cover. I was avoiding it because I knew that I would revisit tender and painful memories.

My daughter, Coleen, was born in 1980 with a congenital heart defect. Her father and I were told several weeks before she was born that she might not survive her birth. She was four months old when on my twenty-eighth birthday we were told that this child, our firstborn, would not survive her first year.

Through what some might ascribe to effective intervention and medical care, or what still others might attribute to powerful prayer, precious Coleen miraculously blossomed. She passed her first birthday and her vivid blue eyes twinkled and her impish smile captured the hearts of everyone she met. I traveled to introduce her to relatives who we never thought she’d meet. We convened with doctors in Los Angeles, south of San Francisco where we lived, who were pioneers in pediatric cardiology. All were simply stunned by her progress with no answers as to why.

Yet, during her second year, it was apparent that she could not defy the odds against her. Her deficient heart could not keep up with a body that needed to thrive. Children grow at amazing rates. A normal one-year old triples his or her birth weight and by a second birthday that birth weight has quadrupled. A healthy heart is key to this remarkable growth.

We lost Coleen a few short months before her second birthday. She was, to us, a perfect child with a personality as big as the moon and a smile unforgettable as the stars. In those twenty and more months however, as parents of a terminally ill child, we were frustrated with interminable delays, the arrogance of specialists, a disorganized medical records system and the cover-ups of mistakes. Days after she was initially released from a renowned teaching hospital at the University of California at San Francisco, it was discovered that the head physician in charge of neonatology was a fraud who had never even graduated from medical school.

We were simply stunned and yet we continued to endure a flawed medical system fraught with inaccuracies and conceit. Doron Weber, the author of “Immortal Bird: A Family Memoir” and the father of Damon Weber has chronicled his similar experience in this unforgettable book.

Doron and Sheleagh’s firstborn son, Damon, was born in 1988 with a congenital heart defect that was mended with surgery when he was very young. However, in late 2001, when Damon was thirteen years old, he became increasingly weaker and ill from complications related to his initial heart condition.

While some of the story records the medical intervention and Damon’s disheartening decline, most of the book focuses on Damon’s incredible strength, his amazing spirit and his unwavering will to beat the odds. He rarely complained but managed to enter a very competitive high school in Brooklyn where he acted in and directed stage plays. He even managed a very small part in one episode of the HBO series, Deadwood. In the fall of 2004, just months before he died, he was the recipient of a transplanted heart. The unthinkable happened soon after when he contracted an infection from that new heart – the one that had promised him a longer life.

In the last year of Damon’s life, Doron Weber fought a maddening battle, advocating for his son in medical institutions that lacked a central record and with doctors who rarely listened to the people who knew Damon best, his parents. As things spiraled out of control, I couldn’t help but react to the unbelievable mistakes and ineptitude of the medical professionals assigned to Damon’s case. In the end, a grave misdiagnosis hastened Damon’s death and a family lost their eldest son.

In the epilogue of “Immortal Bird”, Doron Weber writes that “Damon died three days before my birthday. That’s a misleading statement since no one you love dies once. They die for you repeatedly, over and over.”

All parents who have lost a child know that while you can never change what happened, you do have the choice to move on from it, keeping lost ones in your heart and reconciling the painful memories when you feel the strongest. “Immortal Bird” is frustrating, poignant, and powerful. I anguished, and sometimes I relived, many of the moments that were told in this tender and vivid story by a father who loved his child more than he could have ever imagined. Yet, it is books like Weber’s that many of us turn to in times we when need to heal from memories while we rediscover the strength within us.

If you would like to reserve any books in the Minuteman Library System please call the Reference or Information desks of the library, 781-799-0200 or reserve them in the Minuteman Library catalog.