Immortal Bird: A Family Memoir [NOOK Book]


A searing account of a father’s struggle to save his remarkable son from a rare heart condition that threatens his life—“a powerful and lyric portrait of a son and a vibrant family” (Toni Morrison).

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 ...
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Immortal Bird: A Family Memoir

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A searing account of a father’s struggle to save his remarkable son from a rare heart condition that threatens his life—“a powerful and lyric portrait of a son and a vibrant family” (Toni Morrison).

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, who vigilantly look for any signs of danger.

Unbowed by frequent medical checkups, Damon 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. But running through Damon’s coming-of-age in the shadow of affliction is another story: his father Doron’s relentless search for answers in a race against time.

Immortal Bird is a stirring, gorgeously written memoir of a father’s fight to save his son’s life.
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Editorial Reviews

Reeve Lindbergh
…frustration and rage are not the story here. The story is Damon himself, his life, his loyalties, his courage, his eloquence (Damon's blog excerpts alone make the book worth reading) and his family, all rendered with love, humor, pain and exquisite clarity. Beautifully told and skillfully paced, surprisingly joyful at times, this memoir above all presents an extraordinary young life. In the brightness of this life, the realities of illness, pain and medical imperfection are secondary for the reader, and ultimately disappear. The radiance remains.
—The Washington Post
Publishers Weekly
A father celebrates his son’s life while trying desperately to save it in this luminous character study­–cum–medical odyssey. Weber recounts his teenage son Damon’s battle with enteropathy, a usually fatal disorder, linked to a congenital heart defect, that starves the body of protein. Weber threw himself into researching and managing his son’s ailment, but nothing stopped the progressive debilitation and wasting; finally Damon received a heart transplant that brought new disasters in its wake. Weber’s detailed, harrowing narrative of Damon’s struggle is in part an indictment of modern medicine, which he depicts as a combination of miraculous technology with dangerously flawed basic caregiving; his furious accusations of substandard practice at New York’s prestigious Columbia Presbyterian Hospital—erroneous prescriptions, botched diagnoses, slipshod nursing, callous doctoring, “drive-by exams”—will raise eyebrows. But Weber reserves most of his energy for a tender, clear-eyed profile of his son. Small, sickly, but charismatic and a natural actor, Damon cunningly conceals his physical weaknesses while extracting every ounce of happiness from his straitened circumstances; even as he fades, this kid seems to own every room he enters. Weber’s heartbreaking story gives us both a tragic cautionary tale and a moving account. (Feb.)
From the Publisher
“Apowerful and lyric portrait of a son and a vibrant family.”—Toni Morrison

“I was seized by Doron Weber’s prose….We’ve gained a book of rare passion.”—Nancy Milford, author of Savage Beauty and Zelda

“I found it almost impossible to read this book, or even to see the pages, at times, through my tears. It was equally impossible to stop reading it—to turn away from its red-haired teen hero or the voice of his adoring father. The boy Damon, whose lifeis delimited by his damaged heart, emerges here as the grandest spirit in a small body since Antoine de Saint-Exupery imagined The Little Price.”—DavaSobel, author of Longitude

Immortal Bird is the best portrait of a childhood I’ve ever seen, and a moving and unforgettable evocation of the intense love between a father and a son.”—Richard Rhodes, author of The Making of the Atomic Bomb

“In language at once vivid [and] heartfelt…Weber recounts the medical battle that followed [his son’s heart condition] while powerfully conveying his love for his son. This one will disrupt your sleep.”Library Journal Pre-Pub Alert

“A heartsick father's poignant account of his heartsick son, and a primer on the fragility of life.”Kirkus Reviews

“[A] detailed, harrowing narrative…a tender, clear-eyed profile of his son…Weber’s heartbreaking story gives us both a tragic cautionary tale and a moving account.”—Publishers Weekly

“Ferociously tender…lovely and heartbreaking.”People Magazine (3/5 out of 4 stars)

“Heartbreaking.”—Entertainment Weekly

“Beautifully written…[As] the end approaches, so does a sense of the miraculous: Like the brightest stars, Damon’s energy consumed him, even as it galvanized others. It’s that luminosity, carefully expressed by a devoted father, that makes this memoir so transporting."—MORE Magazine“Both heartbreaking and life-affirming, this is a tender tale of the love between a father and son.”—Booklist

“A heart-wrenching family memoir that describes the deep love between parent and child, while also celebrating the nobility and spirit of a boy who embraces life with a fiery passion.”—Bookpage

Library Journal
When Weber's son Damon was born, his heart lacked a second ventricle. Two open-heart surgeries allowed him to manage a full life that included a love of acting (he appeared in the HBO series Deadwood). Then, at age 13, Damon's heart rebelled. In language that seems at once vivid, heartfelt, and angry, Weber recounts the medical battle that followed while powerfully conveying his love for his son. This one will disrupt your sleep.
Kirkus Reviews
A father's intimate portrait of a dying son. In his debut memoir, Alfred P. Sloan Foundation program director Weber chronicles his son's monumental struggles with a malformed heart. Damon's coming-of-age amid his illness quickly becomes the narrative focal point, as well as the effects of a family worn thin from the strain of his suffering. Damon's father provides a voyeuristic view of a family in turmoil, serving as both patriarch and Damon's most dedicated supporter. Yet after 9/11, Weber reached a startling conclusion: "Why couldn't we stop this?" he writes. "What else can't we protect [the children] from?" The answer was, heartbreakingly, a life-threatening illness. After a series of surgeries and the near-constant seesawing of Damon's health, the family soon learned that a heart transplant remained his only option for survival. Weber faithfully recounts this struggle, but Damon's blog posts provide the most unadulterated view of innocence corrupted by illness. Weber's occasional overstep from intimacy to indulgence is easily forgiven by the characters he brings to life, even as he watches his main character "disintegrating before [his] eyes." In the climactic scene, as father and son met once more around the hospital bed, the author attempted a stoic farewell to his son: "There's no time for false modesty," he writes. "I'm only giving Damon is due." A heartsick father's poignant account of his heartsick son, and a primer on the fragility of life.
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Product Details

  • ISBN-13: 9781451618082
  • Publisher: Simon & Schuster
  • Publication date: 2/7/2012
  • Sold by: SIMON & SCHUSTER
  • Format: eBook
  • Pages: 368
  • Sales rank: 877,071
  • File size: 4 MB

Meet the Author

Doron Weber was born in Israel, grew up in New York, and was educated at Brown University and Oxford. He has worked as a newspaper boy, busboy, waiter, and taxi driver and is the coauthor of three published nonfiction books and various articles. For fifteen years he has worked at the Alfred P. Sloan Foundation, a nonprofit that supports science and education.
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Read an Excerpt

Chapter 1

I am walking up Prospect Avenue with my twelve-year-old son, striding side by side along the mottled sidewalk, when it strikes me he has not grown for a while. I look across at him. Damon’s head—that flame-red, leonine head—still falls below my shoulders, roughly where it had reached the previous year. He is so vital and engaging one easily forgets his size. But now his clipped stature feels like a withholding of fruition, as if his legs were young shoots held back by a clinging, invisible vine. I want to reach down and cut him loose so he can sprout. I don’t want a big change but I feel he needs a little nudge, one more click to get him over the next hump of development.

“So how was school?” I ask. Damon wears baggy jeans, a gray hooded sweatshirt, and Adidas sneakers, with a Walkman round his neck and a cell phone on his belt loop.

“Good. I got picked to read my essay for Kick Butts day.” He speeds up as we talk, swinging his arms to keep up with me, and explains that Hillary Clinton, now running for a Senate seat, is part of the visiting delegation for this stop-smoking educational campaign.

“Congrats.” I salute him. “Need any help with the essay?”

“I’ll do a draft and show you,” Damon says. We stop at Venus Video and select a musical for his audition. “Can Jon sleep over Saturday?” he asks.

“If you get your work done, I don’t see why not.” I pay for the rental.

“Yes! Thanks, Dad!” Damon smiles as we exit, his cerulean eyes dancing with open vistas. But as we continue strolling up the avenue, I again ponder his unsprung height.

He is due for a growth spurt—he is overdue—and I don’t need a tape measure or a doctor to verify my judgment. I can always gauge the slightest change in his body, to a hair’s breadth, and I have a built-in monitor of his progress embedded deep inside me, like a microchip—or is it a mirror? If we are not exactly joined at the hip, we have more than the usual father-son bond connecting us.

Damon is the oldest of our three children. Born on 8/8/88—a date so fortuitous that in China they performed premature Caesarians to snag this birthday—he was an only child for nearly five years before his brother, Sam, arrived. For most of this time, he also was a sick child who required, and received, extraordinary love and attention from his mother, Shealagh, and from me. Even after his sister, Miranda, appeared in 1995, a healthier Damon remained the focus of our family, the pacesetter.

He was born with a malformed heart, for no known reason.

Most notably, Damon lacks a second ventricle like you and I have. His good ventricle, the left, pumps red, oxygen-rich blood throughout his body. But when the blood returns from his body to the lower right chamber of his heart—blue blood now because it has given up its oxygen—there is no second ventricle to pump it back into the lungs, where it can pick up fresh oxygen and expel carbon dioxide. So Damon was a “blue baby” whose organs and tissues did not get enough oxygen. He was smaller and weaker than other infants and his gross motor skills developed more slowly. But his brain, his manual and verbal dexterity, and his imagination never lagged.

By age four, Damon had undergone two open-heart surgeries, and the second operation, known as a modified Fontan, alleviated his problem. A “passive flow” system, it bypasses his right side altogether and shunts the returning blue blood directly to his lungs, where it can take on vital oxygen and discharge carbon dioxide.

After the modified Fontan, Damon’s body received sufficient oxygen-rich blood, and he flourished.

He grew and scrambled back onto the growth charts for height and weight, even catching up to some of his friends. His color improved, his energy increased, and he became physically more active. He is a tortoise, not a hare, but he is intrepid and takes delight in activity of all kinds, from karate and kayaking to soccer and skiing.

Damon is in seventh grade now, attending the Salk School of Science in Manhattan, where he excels academically. He also is an actor who performs in every school play and then in more advanced theater workshops outside school. And he’s become increasingly popular in middle school, more of a star than he’s ever been. When he spiffs up his unruly red hair and dons a dress shirt for the school dance, cruising the room like a confident young blade, he makes an impression. He outshines the taller boys because he actually dances and talks to the girls.

Damon is never going to be the biggest kid in the class or run a four-minute mile, but otherwise he’s in great shape. He’s been healthy for the eight years since his last operation and free of all medications. He sees his cardiologist every six months and she marvels at his progress.

I am keenly aware of all this as we walk together this afternoon. We have lived through a protracted nightmare and survived to talk about it as a page from history, a backstory. I know all about patience and keeping your eye on the fundamentals. Shealagh and I have our own set of milestones for Damon, outside the standard configuration, and we feel inordinately proud of his advancement and the kind of person he’s become.

So on this early fall day of the first year of the new millennium, with the soft yellow leaves raining down from the sky and starting to blur the margins of the pavement, I dismiss my concerns as exaggerated, a common defensive ploy to contemplate the worst, just so you can say it ain’t so.

We turn into the wide embrace of Terrace Place, with the great park at one end, and walk up the front porch into our two-story brick house with its long driveway and small backyard that boasts a bona fide peach tree and a fig tree, our own patch of Eden.

© 2012 Doron Weber

Chapter 2

A perfect spring evening at Yankee Stadium. The air is warm, with the slightest breeze ruffling the flag. The baselines and foul lines are stamped in fresh white chalk.

I have taken Damon and two of his closest friends, Kyle and Keith, to a night game against the Boston Red Sox. The stadium is packed, the fight songs blaring and the beer flowing, as befits these longtime archrivals. But the three teens don’t really care. They enjoy the aesthetics and ambience of the game as much as the competition.

“Check out the body-paint dudes!” Keith points at the bleachers, where seven rowdy males spell “Go Yanks!” in bold lettering across bare torsos.

“I think they’re drunk.” Kyle wrinkles her nose at the beefy, soft-bellied roisterers.

“Man with crazy chef’s hat, six o’clock!” Damon gestures three rows ahead, where a fan sits in a billowing, brimless white hat. “The Mad Hatter is blocking the view—”

“It’s called a toque.” Kyle corrects Damon with her sweet Natalie Portman smile.

“Duh, I think it’s a mascot for Sheffield—he’s ‘the Chef,’” Keith interjects, correcting Kyle.

“Really? Whatever . . .” Kyle giggles as she takes in the information.

“Hey, Dad, can we get Cracker Jacks? Kyle needs brain food.”

Kyle is Damon’s oldest and closest friend, a girl he rescued in kindergarten when the school bus dropped her off at the wrong stop. They are the same age but Damon is a grade ahead, which makes him the sage elder. Now almost thirteen, Kyle changes her hair color every week—today it’s purple with blond streaks—and she wears bangles and bracelets and layers of colorful clothing. She is bright, vital, and quite beautiful, but her identity shifts like a kaleidoscope, with a propensity toward the darker hues.

The Cracker Jacks arrive in a giant box and Kyle and Keith dive in looking for the prize. “If it’s a ring, it’s mine!” Keith smiles.

Keith is a tall, wiry African American, wry, sensitive, and hyperarticulate. He and Damon attend Salk together. Handsome and fine-featured, like a model, Keith lives alone with his young single mother in Harlem and spends weekends with his grandmother in Queens.

“Okay, guys, we need to root for the Yankees,” Damon announces late in the game. “I think they’re losing”—he checks the scoreboard—“and we don’t want my dad to go home unhappy.”

And indeed, after eight lackluster innings, the Yanks rally and pull out the game with two home runs in the bottom of the ninth. The stadium erupts. Damon and I exchange excited high fives, connecting in the moment’s primitive ecstasy. Although not a committed fan, Damon appreciates raw emotion and the thrill of the come-from-behind. And he is impressed by my militant cheerleading for someone other than him. As he embraces Kyle in the pandemonium, I note he looks a little hamstrung, as if nursing an injury.

I wonder if it’s the aftereffects of his “fight.” Five weeks earlier, Damon came home from school with deep cuts and a grapefruit-sized swelling across his forehead. He’d gotten into an altercation with the school bully, a humongous lout twice his size.

“This kid kept shoving me and trying to get in my face,” Damon explained. “He bumped me with his chest: ‘Come on, little guy, fight me!’” I told him I wasn’t afraid of him but I didn’t want to fight, so I started to walk away when he rushed me from behind and smashed my head against the cafeteria table. I never saw him coming.”

Damon sustained contusions, a hematoma, and a concussion. Head injuries even in healthy people are notoriously complex, as both Shealagh and I know: Shealagh did research on war veterans with head wounds at the Radcliffe Infirmary Neuropsychology Unit at Oxford, where we met, and I boxed for Oxford University and learned about concussions firsthand. We kept Damon at home while I initiated disciplinary action against his attacker, a notorious troublemaker, and made sure this could never happen again.

Damon appeared physically traumatized yet stubbornly proud, incised with fresh, deep wounds he’s worn since like a badge of honor. He recovered, and his standing up to the class bully only enhanced his status in school as a leader. But the incident forced me to confront his vulnerability, and my own possible complicity in it. I had always taught Damon to stand up for himself and to hold his ground. But now I felt torn between a father’s pride at his son’s courage and concern that Damon not follow my example too closely, because he lacks the physical resources to defend himself. I quickly realized, however, that any cautionary advice at this stage was futile because Damon’s character had long been formed. All I could do was hug my brave-hearted bantamweight while privately resolving to watch him like a hawk.

We return from Yankee Stadium in high spirits, dropping Keith off in Harlem and Kyle in Ditmas Park. Shealagh, waiting up, gets a full report from her beaming son as we sit in the downstairs kitchen. Damon even eats his mother’s rhubarb pie as he fills her in on the triumphant game.

It’s been a good day. But now it’s late and there’s school tomorrow, so Damon moseys up to the middle floor, where he and Sam have adjacent bedrooms. Shealagh goes to talk to him and get a little private time—mother and son have their own very special bond—before she kisses him good night and leaves.

As I pass through on my way to the top floor, Damon cracks the bathroom door and calls to me from the doorway. “Hey, Dad, can you come here a minute?”

I can sense something amiss as I head to the bathroom. Normally Damon asks his mother about routine matters and saves me for the big stuff.

As I walk inside, Damon closes the bathroom door with mysterious urgency. I feel the burden of a pending revelation and brace myself.

“I wanted to show you this, Dad . . .”

Damon pulls down his pants and lowers his boxers under the overhead bulb.

“Oh man!” I shake my head. “What happened?” His testicles hang down, hugely swollen. They look four times their normal size. He’s a young kid and I am all for his sexual development, but this is alarming. “When did . . . ?”

“I noticed it Friday but thought I should wait a day. But it hasn’t gotten better.”

“Poor guy . . . Does it hurt, D-man?”

He hesitates. “It’s uncomfortable.” Damon has experienced real pain and never exaggerates about such matters. “And it’s kinda awkward, you know—”

“Sure. Okay, this isn’t right and we’re going to take care of it. Pronto!”

I talk to Shealagh, then call a few doctor friends. Two scenarios emerge. A hernia, the most likely, or a twisted testicle, rarer and more urgent. And given Damon’s history, there’s always an extra element of uncertainty and fear.

We decide not to risk waiting until morning and call my parents to come over and babysit Sam and Miranda before we speed off to Columbia Presbyterian Hospital, which has treated Damon since shortly after his birth. It’s a long drive, but Columbia knows his complex case and we trust them. It’s past midnight when we reach the sprawling medical complex in Washington Heights.

Eons ago, we did hard time in this hospital and feared we’d never escape. Once, when he weighed only eleven pounds, Damon spent thirty days in the ICU, trying to come off the respirator. Now as we arrive, the dread memories rise up.

We walk past ambulances, EMT personnel, and two burly cops and enter into the perpetual twilight zone of the emergency room, a cacophony of coughing, moaning, shouting, and crying. We pick our way through the tumult and despair and request immediate care for our son. Damon’s cardiologist, Dr. Hayes, has called ahead and told them to expect us.

The admissions clerk nods, unimpressed, and gives us forms to fill out.

A well-organized unit, we establish ourselves on three plastic chairs. Shealagh distributes juice and snacks and fills out forms, I call home to check on the kids and gather intel from the staff, and Damon, after sweeping the room, disappears into his copy of The Subtle Knife by Philip Pullman.

Eventually an intake nurse admits us and we enter a more orderly if still-hectic space. Someone takes Damon’s vitals and he gets a bed with a flimsy half curtain. We wait until a young resident pops by. He checks Damon’s groin and instantly declares he has a hernia. A bona fide inguinal hernia, the gross rupture will need to be surgically repaired, but he finds no twisted testicle or undue cause for alarm.

I feel a measure of relief but continue talking to the doctor as he examines Damon. Because he is unfamiliar with my son’s anatomy—Damon’s heart is on the right side and several other organs are reversed—I fill him in while he asks questions and offers observations. I’ve long grasped that medicine is an imperfect art, fifty to a hundred years from being an exact science, so I gather information from every possible source. I’ve also learned that good doctors are not necessarily the senior people with fancy reputations—often quite the opposite—and a young resident, if he observes thoroughly and with an open mind, can tell me as much as anyone.

This resident—he has the gift; you can tell in the first thirty seconds—palpates Damon’s abdomen and casually mentions his liver is enlarged, which I’ve never heard before. When I inquire further, he lets me feel how the liver presses against the abdomen, its margins extending beyond the normal range. Damon watches us with quiet, alert eyes, always the model patient, and I wonder if this enlarged liver could explain why his belly protrudes, giving him a slouching appearance. Even in karate class, with his gi neatly belted and his back erect, his stomach seems to slump forward, and zipped into a black wet suit for swimming, he looks paunchy despite his leanness.

Shealagh and I have questioned his cardiologist about this anomaly and we once dragged Damon to a chiropractor to try to sort it out. We exhort our son to stand up straight and pull his shoulders back. Now it strikes us a protruding liver could explain his posture more than any deficiency of spine or will. We feel a stab of guilt that we held Damon even partially responsible. Later, when we pursue the oversized liver with the chief of surgery, he says it is completely normal for children with Damon’s heart condition and he sees it frequently. We wonder why no one ever told us this before.

We schedule the surgery promptly but try to minimize the disruption to Damon’s life. He hates to miss school and has started rehearsal for Charlie and the Chocolate Factory.

© 2012 Doron Weber

Chapter 3

When the morning of his hernia operation dawns, we tell ourselves it is a routine procedure, but with Damon’s medical history, nothing is routine. We envy all our friends who freak out over their kids’ colds.

On the ride in, Damon and I discuss a new play I’m supporting with Alan Alda playing the Nobel Prize–winning physicist Richard Feynman. I work for a well-established philanthropic foundation and one of my roles is to help develop plays, films, and television shows with science and technology themes.

We arrive at the hospital, sign in, and go to the fourth-floor pediatrics ward.

The secretary makes several copies of our insurance and asks us to fill out the same form about Damon’s medical history, several pages long, for the umpteenth time.

A nurse takes Damon’s blood pressure and temperature, weighs and measures him, and exchanges his familiar jeans and T-shirt for a hospital gown that ties loosely at the back. A hearty, decent sort, she means well but her idea of small talk is to ask him three times if he’s nervous. “A little,” Damon says to mollify her.

Another nurse comes in to start an IV. Damon has pale, spidery veins and sticking him requires precision. After an initial adjustment, she gets the line in.

Then a young doctor, bright-eyed with self-importance, saunters in and beams at Damon. “Hi, I’m the resident. Have you ever had any serious medical conditions?”

At first, we think he’s kidding, but he’s not. Damon turns away, too polite to sneer, and Shealagh groans in disbelief. I fire off a rapid, testy medical summary. “Next time do your homework and read the chart!” I say. He slinks out of the room, red-faced.

We wait with other tense parents and their sick children until they send us to the preoperative holding area. A fountain of gurgling water, pink-lit, is meant to soothe our nerves. A tall doctor with a Hungarian accent walks in and mumbles that they want to put Damon under general anesthesia because a local injection could lower his blood pressure, and his pressure is already low. The anesthesiologist tries to rush our consent but we won’t give it until he answers each of our questions and reviews all the options. General anesthesia carries a known risk of mortality, compounded, like everything else, in Damon’s case, and we have learned not to take anything for granted.

The surgeon arrives in his scrubs and quickly runs through the procedure. An affable, highly competent man, he does not anticipate problems and wants to get started. We each ask questions, including Damon—“When can I go back to my karate class?”—before signaling that we are ready. The nurse releases the brakes on the gurney and the anesthesiologist, turning to follow the rolling bed, suggests we say our good-byes now.

“No,” I tell him. “We always go into the operating room with our son. It’s part of our routine.” Damon watches us from the gurney, upset—we touch his arm to calm him—before the surgeon tells the anesthesiologist it’s okay for us to accompany our son.

We quickly throw yellow moon suits over our clothes and don protective face masks before plodding down the corridor beside Damon’s gurney like a team of sterilized astronauts. We turn and push through sealed doors into the operating theater.

It’s a large, cool, brilliantly lit room with state-of-the-art medical equipment surrounded by a tinted observation booth. A lone bed rises in the center, with a giant stainless steel arm arcing above it. A modern setting for sacrifice and, hopefully, healing—a place for testing one’s faith.

I tell myself it’s not as dire this time—this is standard procedure for a hernia—but still, I can’t believe we’re going through this ordeal again.

I keep up a running banter with Damon as they wheel him into position and Shealagh chimes in with reassuring comments. Damon remains stoic and game throughout but he likes having us nearby. I want Mom and Dad to be the last thing he sees when he closes his eyes and the first when he opens them again.

Damon climbs onto the narrow steel bed and they immediately place a mask over his head and tell him to inhale. A team of nurses, doctors, and assistants attaches lines and sensors to Damon. They prick his finger with a needle and he says “ouch” through the mask, but then the nitrous oxide reaches his central nervous system and he begins to laugh. We watch his lips pull back over his large front teeth all the way to the gums as he giggles uncontrollably. His big face with the bright red hair and pale skin fills with induced mirth. Then he is out cold. An array of monitors reads live data input from his unconscious body. We kiss him one last time and leave the operating theater.

We sit in a common room with gray lockers and a coffeepot. We make our calls, try to read the paper, stare into space.

The wait that lasts an eternity.

At some point, the surgeon emerges and walks toward us. We scour his face and body language for clues to our son’s fate. He reaches us and immediately says, “Everything’s okay.” So time begins again, and now we can listen to what he says.

It was a surprisingly big hernia that demanded more surgery than anticipated—“The hernia of the week,” the surgeon confides with a trace of professional pride—but all is well now. We should see improvement within seventy-two hours. Damon will be sore for a few days but the rupture is repaired and the problem solved.

We thank the surgeon profusely, then go to the recovery room to see Damon.

“Hi, sweetie.” Shealagh hugs Damon, who’s groggy from the anesthesia.

“You did great, D-man.” I kiss his brow and congratulate him. He smiles weakly.

We sit by the bedside, each of us holding one of his pale, slender hands. We feed him ice chips until he’s permitted to drink.

The next morning we leave the hospital and take Damon home.

Everything seems to have gone well. Damon had a hernia, which any healthy person can get, and now it’s fixed. There is no apparent connection to his underlying heart disease, nor any long-term ramification. He’ll be back at school within a week and right as rain. We had a spot of bad luck but it’s behind us now.

We try to reassure ourselves with this official prognosis but sense in our depths that something has changed, some seismic but as yet undetectable shift.

Something has changed, but we do not understand it yet.

© 2012 Doron Weber

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Sort by: Showing all of 10 Customer Reviews
  • Anonymous

    Posted March 31, 2012

    Immortal Bird is both a touching and wrenching portrait of many

    Immortal Bird is both a touching and wrenching portrait of many things - a father's love for his son, a gifted child overcoming incredible adversity, a family's love and support in the face of that adversity, the impotence of that family struggling to cope with hard-to-comprehend medical care and decisions, and the callous indifference of the doctor managing that care. It is impressive on all of those levels, but the last two (which particularly come to the fore in the last third of the book) are the most powerful. As part of that section, Doron Weber paints what seems to be a critical though fair portrait of a medical professional's decisions and decision-making process. Unfortunately for Damon, she displayed an ultimately fatal incompetence and stunning indifference in dealing with his his condition. The only thing that's left unclear, and that Weber and the rest of us can never know, is where the incompetence began and the indifference ended.

    What's frightening about the book is that the author was so perfectly positioned to learn and understand the issues at hand, yet despite all of his advantages was left in a position of dependence on an incredibly negligent doctor. Clearly an extremely bright and accomplished fellow, Weber could draw on personal and professional connections to learn all that a layperson could about appropriate and inappropriate approaches to treating his son. Yet he still had to depend on that lead doctor, who made crucially, grossly incorrect decisions that led to his son Damon's death after, all too ironically, successful heart surgery.

    I've read one critical review here at B&N that portrays the author as being misogynistic. That's unfair and unfounded. True, the lead doctor is a woman, as are (if I recall correctly) her junior associates. But incompetence and indifference know no gender boundaries. At no point does Weber even hint that the flawed medical treatment flows from their being women. And plenty of women in the book are portrayed in a very favorable light. In fact, as depicted on one memorable scene, a leading medical expert whose recommendations the lead doctor ignored was female.

    While I found the medical drama the most powerful and sad part of the book, Immortal Bird is of course about much more than this. Many will identify with the story on those other levels. The struggles, pain and yes, joy, that the family experienced throughout Damon's life, including in its closing stages, are touching. And Damon truly was a special guy, both for how he dealt with his condition and for many attributes that had nothing to do with that battle. Much of the book is about him, his spirit and his accomplishments, not about his illness and death.

    In the end, then, Immortal Bird accomplishes its purpose of immortalizing Damon Weber. But for many of us, as moved as we are by that individual story, the even more searing imprint is about how the medical profession, starting with medical education, needs to change to minimize the indifference and incompetence that cut short the life of a wonderful young person. It could happen to any of us. It could happen to any of our children.

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted February 19, 2012

    Immortal tears

    Wow. I honestly do not know what to say... i just closed the book and tears are still streaming from my eyes. This is the first book in a long time that has moved me so. This one will really change your prospective on a lot of things. Truly a beautiful story...just wow. Only thing i would like to say is that i think it is important to ignore Mr. Weber's tendencies... to be... well annoying and focus on the bigger notion of the story, if you can get past certain bits of frustration, you will really be touched! I applaud you Sir your son truly changed the world, and so have you by writing this book

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted October 27, 2011

    A must read!

    In Immortal Bird: A Family Memoir, Doron Weber shares the inspiring yet heart-breaking story of his son Damon's medical battles starting with him being born with a heart defect and culminating with a successful heart transplant gone awry possibly due to substandard practice. Doron goes beyond telling a moving story; he makes the reader feel as if he/she personally knows the family. Damon Weber was a truly gifted actor during his short life and touched everyone he met with his dynamic, upbeat personality. The excerpts from Damon's blog add to the "personal" feeling of the book by giving the reader an inside look into how Damon talks to his peers which reinforces his charismatic personality. I couldn't put Immortal Bird down, even while it made me laugh, cry and want to hug my own son a little tighter and I would highly recommend it to anyone.

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted October 18, 2012

    Powerful & Relevant

    It is practically impossible to explain to someone who has not read this book why they should read it. I dont' even remember why I bought it, but I am so glad that I did. This is one of those rare books that makes you proud at one moment to be a human being and completely ashamed at others. The message between the lines is in large font bold print. Loving each other is a gift that we all should share.

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  • Anonymous

    Posted March 28, 2012

    This book is an obnxious, misogynistic rant. The author is one

    This book is an obnxious, misogynistic rant. The author is one of these delusional people who thinks that money and influence were going to be able to save his child from an inevitable death (the child was born with a heart having only one ventricle). He name drops thoughout the book and allows his son and friends to look at what are supposed to be confidential applications (and make disparaging comments about applicants pictures). He makes insulting comments about how the female doctors look. He becames irate when a doctor takes a weekend off and does not provide him with her home phone number. Columbia Presbyterian hospital needed to call security because of his abuse of the staff. He is suing the hospital because his child died after a heart transplant (and of course somebody needs to pay for that). By the end of this book you end up having no sympathy for the child that died or the family left behind.

    0 out of 2 people found this review helpful.

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  • Anonymous

    Posted March 20, 2012

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  • Anonymous

    Posted October 18, 2012

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  • Anonymous

    Posted February 22, 2012

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  • Anonymous

    Posted November 7, 2011

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    Posted July 3, 2012

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