Item description for Dear Megan: Letters on Life, Love and Fragile X (Capital Cares) (Capital Cares) by Mary Beth Busby...
Mary Beth Busby and Megan Massey have something in common--they are both mothers of two sons with Fragile X syndrome (the most common form of inherited mental retardation and the most common cause of autism). When Mary Beth Busby's sons, Robert and Jack, were born in 1964 and 1965, Fragile X had not even been identified as a genetic abnormality. By the time Megan Massey's sons Jack and Jacob were born in 1989 and 1991, a few researchers had identified it, but few pediatricians knew it existed. Today it is known that Fragile X affects 1 in 4000 males and 1 in 6000 females of all races and ethnic groups. Mary Beth and Megan met when they both became active in the Fragile X Research Foundation (FRAXA). They wrote "Dear Megan" to offer hope and support to the millions of parents who care for and love their disabled children. Written in the form of intimate letters between the two authors--who are separated in age by a generation--the book reveals the personal side of parents struggling with the challenges of school systems and health systems, marriage, and life to care for their disabled sons. It also shows the joy and love they find through these special children and adults.
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Est. Packaging Dimensions: Length: 8.9" Width: 5.9" Height: 0.7" Weight: 0.75 lbs.
Release Date Jul 25, 2006
Publisher Capital Books
ISBN 1933102233 ISBN13 9781933102238
Reviews - What do customers think about Dear Megan: Letters on Life, Love and Fragile X (Capital Cares) (Capital Cares)?
Living with Fragile X: Two Mothers, Four Sons Jan 22, 2008
Every parent of a newly diagnosed child with Fragile X should read this book. Mary Beth and Megan each have two sons with Fragile X. Their letters tell the story of two families' lives: the heartbreaking experience of searching for and finally finding a diagnosis, the simple joys of appreciating these children and their individual accomplishments, and the stories of husbands and wives adapting to their own kind of "normal." The difficulty of raising 2 children with Fragile X cannot be overstated. The coping methods shared by these two women are sometimes difficult to read, and sometimes just hilarious. But the overarching message is that you can find and new "normal", and that life gets better. When you think no one has experienced what you are going through, pick up the book and read about how alone these women once felt and what they each did to connect to other Fragile X families. Their individual accomplishments are astounding.
a book a parent of affected children must read Jan 8, 2008
It is simply a WONDERFUL BOOK. Many thanks to the authors for their courage to share with the readers their inmost feelings and unique personal experience of fragile x challenges.
Dear Meagan review Jan 5, 2007
Dear Meagan was an interesting read regarding Fragile X. The form of the book is through letters written by two women, both of whom have two sons with Fragile X. It is very personal, and the letters give information and research-based facts regarding Fragile X; however, it is intimate as it describes family situations, concerns, and details.
Revealing and inspiring look at what it means to parent a disabled child Sep 29, 2006
I've just listened to Mary Beth and Megan on the Diane Rehm Show and was very moved by their openness in describing their sons with Fragile X and their life with them, how they parent these sons, searched for the best education and medical care for them, and how they have found meaning and joy in their sons, despite their severe disabilities. Their book is an inspiration to all parents with disabled children.
A "must read" for all Fragile X families! Aug 17, 2006
This is the book that all of the families in the Fragile X community have been waiting to read. These letters between two women tell us the story of their personal griefs and triumphs; but they tell us so much more. The chapter called Dropping Bread Crumbs explains Fragile X for the layman more clearly than you've ever heard it explained before. We will all relate to the devastating news of the diagnosis in the chapter called Diagnosis and Dealing. And we will admire the courage of Kelly Randels' chapter on the hearbreak of facing an abortion. These women have the courage to tell us what we need to know; and the talent to keep you riveted throughout their journey in a world that has been defined for them by Fragile X. A extraordinary accomplishment.