Be Kind to Yourself

Caring for a chronically ill child

How do you learn to live with the ongoing medical, emotional and logistical demands of caring for a chronically ill child? Naomi Levy, author of Hope Will Find You: My Search for the Wisdom to Stop Waiting and Start Living (Harmony Books, $23), is a well-known Los Angeles-based rabbi whose happy family life received a shock to its system in July 2001, when she learned that her five-year old daughter, Noa, had a potentially fatal degenerative neurological disease. Although Noa’s poor coordination and awkward movement patterns had since her toddlerhood signaled something was amiss, Levy and her husband, Rob, were nonetheless unprepared for a disease with such a harsh prognosis. And, as often happens, the spouses responded in distinct — and at times discordant — ways. While Rob went into overdrive, keeping fear and dread at bay by staying as active as possible at work and at home, Levy felt emotionally drained, going through the days on auto-pilot. By necessity, Noa was forced to mature quickly in the course of endless doctor visits, medical tests and physical therapy sessions.

Disagreements among Noa’s doctors about diagnosis and treatment were further cause for confusion. (In fact, the doctors never pinned down a specific diagnosis, though they ultimately concluded that the disease probably would not prove fatal.) Determined to put as much energy as possible into helping Noa, but consumed by anxiety, Levy became paralyzed with indecision about how to move forward with her own life. Only gradually did she begin to emerge from her psychological fog by remembering how she coped with past setbacks, including the murder of her father when she was a teenager. She was further aided by weekly Talmud study sessions with a colleague and by the examples of former congregants who had coped under the direst circumstances (most memorably, a homeless man dying of AIDS who nonetheless embarked on a private Torah tutorial with Levy).

Levy frames these reflections and insights as a series of effective — and affecting — mini-sermons and pep talks that blend Jewish wisdom with practical advice. By the book’s end, Noa has successfully celebrated her bat mitzvah and is thriving at a school for children with special needs. Levy herself has reclaimed a sense of mission and acted on her desire to found a progressive community-based congregation. But it is Noa, ultimately, who manages to teach others how to cope by creating (and living by) her own list of “Rules for Living a Rich Life.” They may be simple and to the point — examples include “Be Adventurous,” “Be Kind to Yourself,” “Make Mistakes” and “Laugh” — but as mantras for getting through one tough day at a time, they are hard to beat.

Where Levy’s book is inspirational, And Twice the Marrow of Her Bones: A Mother’s Memoir by Susan Petersen Avitzour (ZmanMa $16.95) reads more like emotional catharsis. Avitzour’s daughter Timora was 12 when she started to complain of fatigue and unusual pains in her legs — the first symptoms of the rare leukemia that eventually claimed her life eight years later, despite numerous treatments and all-toobrief periods of remission.

Throughout her daughter’s ordeal and in the years after Timora’s death in 2001, Avitzour produced a detailed blog about the struggles her daughter faced, and the grief with which the family was left (she has six other children), and those entries form the basis of her densely detailed account. Like Levy, Avitzour initially tried to deny the severity of her daughter’s illness, and at times alternated between a sense of numbness and periods of complete immersion in helping her daughter. Both also drew comfort from Jewish wisdom — interestingly, they each chose to preface every chapter with aphoristic Yiddish proverbs or quotes from the Bible — even while questioning God’s purpose (or lack thereof ) in causing the suffering of children. While the authors can provide no easy answers — for themselves, or for others — their stories demonstrate that meaning can emerge just from the telling of a story.

Diane Cole is the author of the memoir After Great Pain: A New Life Emerges, and is the book columnist for the journal Psychotherapy Networker.