SHE MAY BE LYING DOWN BUT SHE MAY BE VERY HAPPY

A stage actor’s account of her unconventional life with a disabled daughter.

The daughter of an Episcopalian mother and Jewish father, Gelb, who has appeared on Broadway in Wicked and Titanic, among other productions, grew up as “a hybrid. Calm and hysterical. Peaceful and self-loathing.” In adolescence, she relieved the sense of “unending doom” through self-harming acts and barbiturates and opiates she stole from her mother’s bathroom. Theater brought some relief, and in drama school, she fell “in love with a play about a severely disabled epileptic and speechless child in a wheelchair.” This foreshadowed the defining event of her life: becoming a mother to a severely disabled daughter, Lueza. A difficult birth left Lueza unable to lift up her head and body. When doctors told the author that scans did not show brain wave patterns that portended severe disability, Gelb actively looked for the one thing that had eluded her throughout her youth: hope. Then a neurologist revealed that Lueza had basal ganglia damage, which meant permanent impairment. Nonetheless, the author devoted herself to helping Lueza with everything from praying and begging to craniosacral therapy and “holy powder dust from an Indian guru.” Gelb's personal life grew increasingly complicated as both she and her husband took outside lovers whom they incorporated into the family. Yet for all the apparent chaos, the author discovered the unparalleled gift of joy through Lueza, who died at 16 but was never without a smile on her face. “I would breathe her in,” she writes. “Smell her skin and her hair. Mash my mouth into her cheek for kisses….You couldn’t possibly imagine that her life would be joyful, but this is how she dragged you up and into life.” As she thoughtfully and understatedly explores the challenges of parenting a disabled child, Gelb also clearly reveals the profoundly transformative power of love.

A poignant and a refreshingly restrained memoir.