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by Diane Cole

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.

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