“Immortal Bird: A Family Memoir” by Doron Weber

The emotional energy created by the critical illness of a child is unlike anything else in a family. The medical situation devours much of the family’s life and leaves its mark on everyone involved: parents and siblings, grandparents and friends. Passions are generated, enormous resources are called upon, any moment can suddenly turn into a life-threatening crisis. Yet the child at the heart of all this, time and time again, is a vitally appealing human being who seems to concentrate and radiate the intensity around him in a powerfully sustaining way, as if it were a form of light.

In Doron Weber’s new memoir, “Immortal Bird,” Weber’s oldest son, Damon, is the sick child. Damon had two open-heart surgeries before he was 4 years old. By the time he was 12, with a lively, magnetic personality that made him popular at school and adored by his younger siblings at home — Sam, five years younger, and Miranda, seven years younger — his health was clearly still compromised. Because Damon was smaller and weaker than his contemporaries, Weber thought of the boy’s condition as “a withholding of fruition” and waited for a growth spurt that seemed long overdue.

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(Simon & Schuster) - ‘Immortal Bird: A Family Memoir’ by Doron Weber

Doron and Shealagh Weber were devoted, intelligent parents whose commitment to addressing Damon’s medical problems began when he was born and continued unabated over the years. At the same time, they worked to maintain a normal life for all three of their children, despite the disruptions caused by Damon’s condition and treatments: the two heart surgeries, a hernia operation, attacks of nausea and asthma, a gravely serious illness called PLE, or protein-losing enteropathy, and ultimately a heart transplant.

The family strictly maintained its habits and schedules: for school, where Damon excelled academically and was becoming a promising young actor; for August vacations in Scotland, on the Isle of Skye, where Shealagh had old family connections; in preparing for Damon’s bar mitzvah and for rigorous entrance exams for some of New York’s top high schools. During these years they also experienced the cataclysm of Sept. 11, 2001, and the death of Shealagh’s father in Germany.

Over the course of Damon’s illness, Doron Weber meticulously studied every aspect of his son’s condition. A director of programs at the Alfred P. Sloan Foundation and the author of two medical books, Weber was able to call upon eminently qualified friends and associates all over the world and to attend an international symposium of world experts on PLE.

Although few have Weber’s contacts, all parents of critically ill children will be familiar with the unflagging, watchful care Doron and Shealagh brought to bear upon their son’s health. Parents will be familiar, too, with Damon’s refusal to be defined by his disease or by the limitations it placed upon him. Sometimes he was willing to take responsibility for his health, and sometimes, especially as a teenager, he wasn’t. Weber writes, “Damon just wants to lead a normal life.”

“Leading a normal life” could mean going outside on a winter day without a coat or skipping a protein-filled meal, both dangerous to his health. How could his parents provide a balance between the child’s desperate wish to be “normal” and their own struggle to keep the child alive, while trying not to seem desperate themselves?