Sep 11

Loving Rachel: A Family’s Journey from Grief

Posted by Soliloquy in For parents | Intellectual Disabilities | Vision Impaired


In 1983, Jane Bernstein had everything she ever wanted: a healthy four-year-old daughter, Charlotte; a happy marriage; a highly praised first novel; and a brand new baby, Rachel. But by the time Rachel was six weeks old, a neuro-ophthalmologist told Jane and her husband that their baby was blind. Although there was some hope that Rachel might gain partial vision as she grew, her condition was one that often resulted in seizure disorders and intellectual impairment. So began a series of medical a…

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4 Responses

  • Anonymous says:

    Review by for Loving Rachel: A Family’s Journey from Grief
    I thought this was a wonderful book. It manages to be not only about what it’s like to give birth to a disabled child, but about the particular nuances and responses of a family, about a marriage, an older child’s attempts to navigate these waters, the narrator’s complex, ambivalent but ultimately loving and couragous response to the child she has borne. Nothing is simple in this book–not Rachels’ progress, not her family’s response to her, not the medical world that sometimes seems to hurt her as much as it helps her, not the waiting and waiting to see what Rachel will become. Nonetheless, this is a story not only about endurance, but also about the complicated, powerful workings of maternal love.

  • Elizabeth Evans says:

    Review by Elizabeth Evans for Loving Rachel: A Family’s Journey from Grief
    Jane Bernstein has done an amazing job describing the heartbreak of the initial diagnosis and the ensuing challenges of raising a child with special needs. Having been in this same position with my own daughter, I felt like Jane was sitting in my kitchen watching the struggles we were having and the ones we faced with each passing day. I have recommended this book to colleagues and other families with similar circumstances.

  • DawnLowenstein says:

    Review by DawnLowenstein for Loving Rachel: A Family’s Journey from Grief
    I have the sequel to this book and decided to purchase the book: Loving Rachel: A Family’s Journey Through Grief! I’m glad that I have both books! As I’ve mentioned, being born with a congenital disorder myself has broadened my interests in people who have special needs children!

  • April Hair says:

    Review by April Hair for Loving Rachel: A Family’s Journey from Grief
    I have a child who also has this disorder. Loving Rachel was important for me to read because there are no other books written which address Optic Nerve Hypoplasia or Septo Optic Dysplasia, but I want everyone to know who considers reading this that Loving Rachel is not a guide for you or your child and that no two people are affected in exactly the same way by this disorder. I could relate with some of the things Ms. Bernstein wrote about but mainly I walked away from this book feeling sad for this family and for Rachel.



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