Rachel Bernstein is an adorable and sunny child who charms strangers when she shakes their hands and stands inches from their faces. The tiny girl with ringlets is 8, but could pass for 5 or 6, which is fine with her mother, who then doesn't have to answer questions about her daughter's developmental delays.
Then Rachel grows up into a full-sized woman who startles others with her nonstop constant chatter and impulsiveness.
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By Jane Bernstein |
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Once disabled people grow up and lose their "kittenness," the world views their oddities differently.
That is one of the unsentimental truths found in this refreshingly honest memoir by Jane Bernstein, Rachel's mother and a Carnegie Mellon University professor.
This is Bernstein's second memoir about her daughter, following "Loving Rachel," a book about the early years of Rachel, who is nearly blind and mentally impaired.
The second book picks up where the first one left off -- Rachel from age 5 to 22, growing up in Squirrel Hill. She is rebelling from her mother and trying to make it on her own in a world that doesn't have many places for her to live.
The book is a self-portrait of fierce maternal love, the kind of love that makes Bernstein fight tirelessly for the right setting for her daughter at a time when there are huge waiting lists for residential placements.
It is also an unvarnished portrait of maternal weariness. She doesn't sugarcoat how Rachel sometimes drives her batty with her constant demands.
"Her chatter had become so incessant that my own marbles had begun to rattle. Can I have an apple? Didn't you just have an apple? Yes. May I have an apple?"
Bernstein is also torn by people who say she really ought to "do something" about Rachel, that is, send her away so she can devote herself to her other daughter and husband.
Then there is another group of people telling her that her only obligation is to her daughter who can't take care of herself.
Sometimes, the book spends too much time talking about a particular social worker and Bernstein glosses over her divorce in a few paragraphs.
But this is a moving memoir, not just for people with a disabled child, but for anyone who feels powerless about the limits of love.