Customer Reviews

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

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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.

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.

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.

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.

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 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.