Dear Megan: Letters on Life, Love and Fragile X (Capital Cares) [Paperback]

Mary Beth Busby (Author), Megan Massey (Author)

Book Description

Series: Capital Cares | Publication Date: July 25, 2006

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.

Editorial Reviews

Review

Written for parents of special needs children; however, it is also for all brave enough to follow their example --The Right Reverend Jane Holmes Dixon

Written as letters between the two mothers, Dear Megan is highly readable, informative, ground-breaking and unforgettable. --E. J. & Roger Mudd

About the Author

Mary Beth Busby is the mother of two adult sons with Fragile X syndrome and is the vice president of the Fragile X Research Foundation (FRAXA) Board of Advisors in Washington, D.C. Megan Massey is the mother of two teenage sons with Fragile X syndrome and is a member of the Board of Directors of FRAXA. She lives in Scottsbluff, Nebraska.

Product Details

• Paperback: 224 pages
• Publisher: Capital Books; 1st edition (July 25, 2006)
• Language: English
• ISBN-10: 1933102233
• ISBN-13: 978-1933102238
• Product Dimensions: 8.9 x 5.9 x 0.7 inches
• Shipping Weight: 12 ounces
• Average Customer Review: 5.0 out of 5 stars  See all reviews (6 customer reviews)
• Amazon Best Sellers Rank: #983,926 in Books (See Top 100 in Books)

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Customer Reviews

Most Helpful Customer Reviews

7 of 7 people found the following review helpful:

5.0 out of 5 stars A most remarkable, touching, educational, moving book, August 1, 2006

By 

Diana D. Zentay (Washington, D.C.) - See all my reviews
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This review is from: Dear Megan: Letters on Life, Love and Fragile X (Capital Cares) (Paperback)

This is an incredible book. Mary Beth met Megan at a conference for parents of children with Fragile X, and decided to write to her. Mary Beth wrote to Megan, and in her letter, she quotes Margaret Mead: "Never doubt that a small group of thoughtful, committed citizens can change the world." And, indeed they have. They have also exchanged these simple, yet powerful letters. -- letters that talk about daily life, advice to each other, their family histories, the nature of Fragile X, the pain of Mother's Day, the nature of what is a home -- an endless array of interesting subjects. But these letters reveal so much more, namely, their courage, their disappointments, their tenacity, their truthfulness, their endless ability to love. It is a book that shows the human spirit at its best and is an inspiration to us all.

5 of 5 people found the following review helpful:

5.0 out of 5 stars A "must read" for all Fragile X families!, August 17, 2006

By 

Nancy C. Bailey (Cape May, NJ) - See all my reviews
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This review is from: Dear Megan: Letters on Life, Love and Fragile X (Capital Cares) (Paperback)

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.

3 of 3 people found the following review helpful:

5.0 out of 5 stars Revealing and inspiring look at what it means to parent a disabled child, September 29, 2006

By 

Kathleen P. Hughes "avid reader" (Waterford, VA) - See all my reviews
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This review is from: Dear Megan: Letters on Life, Love and Fragile X (Capital Cares) (Paperback)

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.