Loving Rachel: A Family's Journey from Grief

by Jane Bernstein

In 1983, Jane Bernstein had everything she ever 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 and emotional setbacks that were to plague Rachel and her parents and strain their marriage to the breaking point. Spanning the first four years of Rachel’s life, Loving Rachel is a heartbreaking chronicle of a marriage and a compelling story of parental love told with searing honesty and surprising humor.

Genres: Nonfiction, Memoir

296 pages, Paperback

First published December 31, 1988

About the author

Jane Bernstein's new novel, The Face Tells the Secret, was published by Regal House in the fall of 2019. She is the author of five previous books, among them the memoirs Bereft - A Sister's Story, and Rachel in the World. Jane is a lapsed screenwriter and an essayist whose work has been widely published in such places as Creative Nonfiction, The Sun, and the New York Times Magazine. In 2018, her essay “Still Running” was chosen for Best American Sports Writing 2018, and Gina from Siberia, a picture book she wrote with her daughter Charlotte Glynn was published. Her grants and awards include two National Endowment Fellowships in Creative Writing and a Fulbright Fellowship. She is a professor of English and a member of the Creative Writing Program at Carnegie Mellon University." Visit www.janebernstein.net to read some of her shorter work.

Reviews

[Karen · Rating 5 out of 5]

This is the third time I have written this review, it seems almost impossible without sounding whiny, or preachy or truly pathetic.

Quite possibly this author is better at describing what I frequently feel like more than I am. That said, I don't think either of us feel sorry for ourselves, but dang...it's hard to understand how having a special needs child affects you personally without struggling with how other people perceive you, pity you, avoid you...

She hits on all the fears and documented realities of families like mine. How 80% of the marriages end in divorce, how family members and friends don't mean to but they tend to avoid you, how very good people struggle with trying to understand why even simple things seem to be so damn hard for you. Even with this, we are the fortunate ones and know it.

Read this if you have a friend, co-worker, family member or acquaintance with a special needs child. Read this if you work with families who do. Read this on a day when your child's temper tantrum drives you nuts and realize again how fortunate your life is. Thanks in advance.

[Riley · Rating 5 out of 5]

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 www.jacktarfilms.com/rachelis.html for anyone who is interested in seeing the trailer.

[Chrystal · Rating 4 out of 5]

I really enjoyed this book. It's written by the mother of a child who is discovered to be blind a few months after birth. There is very open talk about how this impacted her relationship with her husband and then four-year-old daughter, as well as other family and friends.

The mother, Jane, finds herself in a world in which she never imagined herself being. She shares thoughts that most people keep to themselves. Thoughts that felt very familiar when I thought back to my response to my own daughter's diagnosis of Down syndrome.

Rachel was born in 1983 and I found it interesting to see that while surely things have changed since then, the emotions are timeless. In that way, the book never seemed dated.

I never felt sad reading this book, though grief is interwoven through the story. I think that may be because I've been there and realize that it's just a natural part of the journey.

The one thing that bothered me a little was the author's apparent obsession with the fact that her daughter could be found to be "retarded." She mentions it many times. If this were one of those stories where everything just ends up being ok in the end and it's all wrapped up with a pretty little bow with a sigh of relief and an expression of, "Whew! We just dodged a bullet, huh?" then maybe it would bother me more. But, like I said, she's honest about how she feels and it *is* scary to be faced with the unknown, so...I get it.

Where this book ends, Rachel in the World begins. I'm interested in reading that one eventually.

[Cate · Rating 3 out of 5]

I read this after reading the sequel Rachel in the World. It was sad to read them backwards. Maybe knowing how it turns out isn't the best thing.

The one funny thing about this book was how dated it seemed. There were so many references to 1980s-specific stuff. Just an amusing side note.

[Ann]

This was one of the first books I read starting to get into the genre of special-needs parenting in the summer of 1986.
This book deals with the little girls visual impairment as well as for cerebral palsy.

[Linda · Rating 4 out of 5]

I loved this book. It was a memoir written from the heart of a mother unexpectly finding out her newborn was blind and mentally challenged.

[Jamie · Rating 5 out of 5]

Beautifully moving.

[Tracey · Rating 3 out of 5]

This is a mother's journey with a child who is blind and mentally handicapped.