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Rachel in the World

Rachel in the World: A Memoir

Copyright Date: 2007
Pages: 280
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  • Book Info
    Rachel in the World
    Book Description:

    What happens when love is no longer enough? Jane Bernstein thought that learning to accept her daughters disabilities meant her struggles were over. But as Rachel grew up and needed more than a parents devotion, both mother and daughter were confronted with formidable obstacles. Rachel in the World, which begins in Rachels fifth year and ends when she turns twenty two, tells of their barriers and successes with the same honesty and humor that made Loving Rachel, Bernsteins first memoir, a classic. Bernstein's linked narratives center on family issues, social services, experiences with caregivers, and Rachel herself--difficult, charming, hard to fathom, eager for her own independence. Bernstein invites the reader to share the frustrations and unexpected pleasures of finding a place for her daughter, first in her family, and then in the world.

    eISBN: 978-0-252-09050-9
    Subjects: History, Sociology

Table of Contents

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    (pp. 2-11)

    It took me a long time to get comfortable withLoving Rachelas the title of my 1988 book about my daughter Rachel. It seemed a little soft and sentimental at first, not at all the way I saw myself or my own work. I simply got used to it, the way one grows accustomed to the name of a child or a dog. Fifteen years later, when I decided to write a second book about Rachel, I went back to that volume and saw for the first time how apt the title was. Like the best of titles, it...

  2. PART 1

      (pp. 16-25)

      In the summer of 1988, I bought a pair of water wings for Rachel, inflatable rings that fit around each upper arm. It took me until she was almost five years old to get them because I kept remembering my mother’s advice of long ago to avoid such devices because children depend on them and then never learn to swim properly. I bought them because Rachel was getting hydrotherapy at Children’s Specialized Hospital in Mountainside, New Jersey, where she was in preschool, and one day when I looked in on her, I saw her splashing wildly, laughter echoing in the...

      (pp. 28-39)

      Here’s Rachel at eight, walking beside me in the supermarket one afternoon. One moment she’s helping me push a cart, and the next, just as I’ve turned to check the expiration date on a gallon of milk, she is approaching another shopper, demanding to know what the woman is buying.

      She is curly-haired and cute and very small, not just small for her age, but not even on the standard growth curve for a child her age. Because of her developmental problems, this particular fact, which I am reminded of mostly when she has a medical appointment, doesn’t especially concern...

      (pp. 42-53)

      In 1993, Rachel turned ten and my uncle Ben turned ninety— maybe. He wasn’t exactly sure anymore, and no one was left to argue that his real age was eighty-nine or ninety-one, or to tell those in the next generation the actual date of his birth. Both Ben and his brother took the Fourth of July as their birth date when they emigrated from Russia or Moldava; there was even disagreement about the name of the country since borders in that region had changed so often.

      Forgetting his age was the least of Ben’s problems. He remembered his two daughters,...

    • 4 ON REGRET
      (pp. 56-69)

      I’m sitting in a pediatrician’s chilly exam room one morning a year after the crisis with Uncle Ben, shivering on the table beside Rachel. Her cheeks are flushed, and her long pale arms are bare. She is cold and I am scared. It’s not her health that worries me, though for the past couple of weeks she’s been sick with one thing or another, every evening seemingly better, and at daybreak, coming into our bedroom, burning with fever. Earlier on this particular morning on a day I have to teach, I’d imagined getting her dressed and putting her on the...

      (pp. 72-85)

      How odd it seems that after fifteen years of dreaming and planning for the time when I would be free from the everyday responsibility of Rachel, never once had I fully imagined her alone in the world, navigating without my intercession. That was the case until the night I stood in my kitchen, holding the airline ticket her father had bought for her. According to the itinerary for her return trip, Rachel was to depart from Tampa–St. Petersburg, with a layover and change of planes in Miami, before the connecting flight home to Pittsburgh. All this she was supposed...

      (pp. 88-101)

      Meryl wasstaff,and staff had been at the center of Rachel’s life, and mine, for some time now. Staff worked on behavior management issues with Rachel while providing her with much of her social life. They discussed strategies they’d used with Rachel, though there was little I hadn’t already tried, and made it possible for me to teach and write and have a life apart from her.

      The women who worked with Rachel could be divided into three categories: “companions” I hired and paid for myself; TSS’s—therapeutic support staff—that came through Wraparound, a program funded by Medicaid;...

      (pp. 104-123)

      In the spring of 2002, the crocuses pushed up and the daffodils blossomed and froze, and I worried about work—not my own, which I loved, but what kind of work Rachel might be able to do when she was no longer in the shelter of school.

      On one April morning—an average morning, in fact—after quarreling with her because she would not put her bowl in the dishwasher, and threatening to take away her Uno cards if she did not brush her teeth, I asked her if she knew whatworkmeant. After a few false starts—trying...

    • 8 TALKING
      (pp. 126-147)

      Two years in a row, Paul picked up Rachel from camp in mid-August and took her to Maine House, where he lived when the weather was warm. During these few days without her—glorious days, whatever the weather—a soothing voice clicked into gear.It will be fine. Everything will be okay.Or sometimes:You’ll live with it. You always have.

      In the meantime, there was work to do on her behalf. The transition-planning forms were due at her school before Labor Day: twenty pages of questions about her “abilities, interests and future goals” that gave me the chance to...

  3. PART 2

    • 9 KISHORIT
      (pp. 152-161)

      Rachel and I arrived at Kishorit on a Sunday afternoon in February 2004. Though I recognized the yellow houses from the video, I was unprepared for the whole of it, the bright sun and crisp mountain air, the twittering birds, the beds of lavender and mint, the sculpture everywhere. As we trudged up a hill to the administration building to announce that we were here, I said, “This is paradise, kiddo,” as if any minute she would squeeze my hand and agree that the place was awesome. I really did wish that Rachel could take in something of the loveliness...

      (pp. 164-171)

      I did not miss Rachel or yearn for her company. Sometimes, in shame or surprise, I convinced myself that I never even thought about her. Of course, this wasn’t true, since I called her every evening. My attentiveness did not thrill her. Though she answered her phone with a cheerful “hel-lo,” as soon as she heard it was me, she said, “Call me later. I’m busy.” If I stayed on the line, she would nag me about her father. She wanted Daddy to call, demanded I give her Daddy’s number. She could not make outgoing calls on her bedside phone...

      (pp. 174-187)

      In April, there was Dov. And there was Rachel’s father, who was very ill.

      Dov was Rachel’s friend, or so Nis told me. What he actually said was, “She’s better now. She likes to be with Dov.” These were thrilling words to hear, not so much the mention of this friend, Dov, about whom I knew nothing, but that Rachel wasbetter,happier, less annoying. In the conversation before this one, Nis had blurted, “She’s alienating everyone!” It was the first time I’d heard him express irritation over my daughter. Though nothing he told me was new, it made my...

      (pp. 191-209)

      “Where is Rachel living now?”

      This was the question everyone asked when we returned from Israel, where we had lived so well in our separate apartments, hours apart from each other.

      “With me.” And hating it.

      She had passed her twenty-first birthday and was again living with me, in a house I had bought before we left for Israel. Only now, if anything, she was more miserable. She did not say she was lonely and bored and sick of my demands, complaining instead that I was ab-i-t-c-hand that her sunny new room, with its chaise and computer setup,...

    • 13 AT EMILIA’S
      (pp. 212-227)

      Her name was Emilia, and she lived with her husband and two little boys in a townhouse on a highway north of Pittsburgh. To me, it was a distressing nowhere kind of place, off a busy road dotted with stores, but Emilia, who was reserved and said little, told me she was happy there. She liked the trees and the playground behind the houses. She was less certain about why she wanted to have Rachel live with her family or what it would be like. When I asked her, she said, “I’m home with my boys anyhow.” It was the...

      (pp. 230-239)

      On commencement day, sixteen graduates walked or rolled up the aisle in emerald-green mortarboards and flowing academic gowns. Beneath Rachel’s shiny gown was an open-backed dress we’d bought for the occasion, navy blue cotton with tiny appliquéd whales. The dress was nothing to her. She didn’t care about the dress or the pink T-shirt with the New York skyline in sparkles, or the pink linen skirt with the ruffled bottom. She didn’t care that her sister had pushed for her to have these new outfits (and others). She didn’t care about the sandals with metallic green straps that we picked...

      (pp. 242-249)

      All through June and into July, the house on Sycamore Street was everything I wanted for Rachel. Each morning I woke, seized with the determination to get her into that empty bedroom, with Wendy’s help.

      In reality, there was nothing I could do apart from dreaming about the long, hilly street lined with neat houses, and it was killing me. “I know it has been hard for you to manage the uncertainty surrounding Rachel’s residential placement,” Wendy wrote in an e-mail on July 6. “I know that you have an intense desire to actively do something to improve Rachel’s chances,”...

      (pp. 252-263)

      I didn’t truly believe that Rachel was moving until the morning of August 23, 2005, when I sat in the bright, open kitchen of the apartment that would be her home and helped to plan her new life. I had announced to family and friends that we’d finally found a place for her to live, taking pleasure in hearing my own words. I had packed up her clothes and possessions in bags and loaded them into the car. I’d shopped with Charlotte and Rachel, choosing new linens and towels and pretty things for her room. I had set up meetings...