|
Editorial Review Product Description
Katherine was a beautiful, perfect baby for the first year of her life. Then, without warning, she changed forever. She started crossing her eyes. She cried at night for hours at a time and could not be soothed. She stopped saying words, stopped crawling, and began what would become a lifelong habit of wringing her hands. Hospital visits and consultations with doctors offered no answers to the mystery. Soon Katherine slipped away to a place her mother and father could never reach.
In Keeping Katherine, Susan Zimmermann tells the story of her life with her daughter Katherine, who has Rett syndrome, a devastating neurological disorder. Writing with honesty and candor, Zimmermann chronicles her personal journey to accept the changed dynamic of her family; the strain of caring for a special needs child and the pressure it placed on her marriage, career, and relationship with her parents; the dilemma of whether Kat would be better cared for in a group home; and most important, the altered reality of her daughter’s future. A story of personal transformation that reminds us that it isn’t what happens to us that shapes our humanity, but how we react, Keeping Katherine shows the unconditional love that exists in families and the gifts the profoundly disabled can offer to those who try to understand them. ... Read more Customer Reviews (5) 
the truth about Rett
This book was exactly what I've been looking for. Rett is not common in my area so no one knows what it's like. I needed something from a parent's perspective that was brutally honest, and this is it. Susan is truly a hero, and did the world a favor by writing the truth in her book.
The Challenge of Love
If you don't love, you aren't challenged.This book presents a journey of love and loss and acceptance.
The most difficult thing a parent can experience is losing a "normal" child to a disease or condition and then parenting the "new" child.One can never forget the child whom was lost, despite the love and devotion to the disabled child.
As a mother of a disabled child for 29 years (whom we suspected had Rett Syndrome but didn't), this book gave me another voice in the wilderness.
Margaret Marshall Rhyne, Remembering Alexis, Finding Perspective in Love and Loss
A fine balance
I just finished reading your touching account of your journey with Katherine. I found your book while in search of "models" for a book I've been invited to help publish. Your book is the perfect starting place for me to help.
You balance love and loss, the emotional and the practical, the personal and the public, so eloquently. You made me love Kat and I haven't even met her. You mirrored my thoughts about terminating a life because you may learn of a probably handicap. I've always thought that these children bring a special message. True, I live in my own glass bubble ... I didn't have to face the hardships of raising such a child year after year. Both my boys are healthy young men now, but I did have a short-lived scare with the oldest. He spent the first week of his life in NICU.
In only that short time, I experience a wide range of emotions ... including not being able to name my baby because he might not live ... then realized I HAD to name him because he might not live.
I'm glad you shared that part of you that our society wants us to hide. The "not nice" thoughts and contemplations. It only makes sense to me that you wouldn't be able to include Katherine on all of your life experiences and why shouldn't you take some time to refresh and renew so you would be able to give more to your beloved child. It was ever clear to me that although you had trouble accepting her condition, you loved/love her very much. You struck a fine balance.
Honestyisn't always the best policy.
Yes, the author is honest, to the point of heartbreak. I really disliked this book, and it just broke my heart how Katherine was treated. It seems as though the author was very self absorbed and couldn't accept Katherine for who she is. I too have a non-verbal, non-ambulatory daughter, so I understand how it feels, I live it.
What I didn't understand was the author's several trips and conferences and most of all the family trips and vacations and then they would leave Katherine at HOME with a caregiver so they didn't have to deal with her. I also couldn't wrap my head around the Grandparents totally ignoring Katherine and the Author allowing them to treat her so shabby. There was a point in the book where the family leaves to go stay at the Grandparents and when they are leaving Katherine is crying, but they go without her anyway!
The author went on and on about HER grief and how she needed the trips etc...but what about Katherine? Just because a person can't talk doesn't mean they can't feel. The author made it seem as though just because she kept Katherine at home that was better than putting her into a care home, yet she was ignored in the home! She wrote about her younger daughter paying more attention to Katherine than she as a Mother did, and how the daughter's felt bad that Katherine was left alone in her room and the times they went away without her.
The only redeeming thing was the end when Katherine has a caretaker that takes her on all kinds of trips and spends so much time with her.
Honest Words
I always scan the newest titles in the special needs section when I visit bookstores. My son, like Zimmermann's daughter, is profoundly disabled. I look for books that connect me to the author's experiences. It helps me to feel less alone. I really scored with this one.
Keeping Katherine is a wise book, exceptionally well-written and honest. Although I didn't go through the extended period of repressed grieving that the author did, I understand it. Among most of us with non-verbal, profoundly affected children, there is the ongoing experience of mourning. It rises and falls, and it doesn't take away the beauty we see in our sons and daughters, nor does it negate the powerful love we feel for them.
In the book, she writes, "To cope with Kat, I have sought out those people like Rita and Linda Orona, who loved Katherine as she was and took comfort from her. Those who held her close and looked directly in her eyes. Those who felt no embarrassment, but understood the peace of her presence."
Those words spoke to me. The book is a wonderful read for parents of children with disabilities, as well as anyone interested in the power of love.
Carolyn Murray
danielsgift.com
... Read more |
