Customer Reviews

Loving Rachel

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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.

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.

Jane Bernstein was a professor/mentor of mine, and I still consider her a friend. In nearly 8 years of knowing her, I don't think I've ever had more respect for her than I did while reading this book. First of all, the writing is impeccable. Second, her honesty, about even the ugliest of feelings or thoughts, blew me away. And finally, what she endured, and how, astounded me.

I can't quite explain the complex feelings that this book evoked in me. Hope, disappointment, joy, frustration, fear, gratitude, understanding... All I can say is that I never felt pity, and I never felt like Jane wanted me (the reader) to.

The "sequel," RACHEL IN THE WORLD, is en route to me right now. I'd also love to see RACHEL IS, a documentary by Charlotte Glynn, Jane's other daughter and Rachel's older sister. Unfortunately I'm not sure how to go about doing that, since it had limited screenings a few years ago... The website is [...] for anyone who is interested in seeing the trailer.

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!

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.