Synopses & Reviews
Fragile X syndrome (the most common known inherited cause of mental retardation and autism) affects 1 in 4000 males and 1 in 6000 females of all races and ethnic groups. 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. Dear Megan takes the form of intimate letters over the years between two mothers of different generations, each with two Fragile X sons. In its pages they reveal what it is really like for families to have and care for abnormal and disabled children. The two mothers met as active board members of FRAXA, the Fragile X Research Foundation, which they both joined to help fight for research to find a cure and help their sons. Through their letters back and forth to each other, they take us on their life journey into motherhood, marriage, families, schools, health systems, politics, all while caring for their four beloved sons and preparing for their futures. Dear Megan is an inspiring story of courage and endurance, but also about the possibilities of life.
Synopsis
Fragile X syndrome affects 1 in 4000 males and 1 in 6000 females of all races and ethnic groups. 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. Dear Megan, in the form of intimate letters over the years between two mothers of different generations, is about dealing with the tragedy of having two mentally retarded children as well as the privilege of joining the crusade to cure Fragile X. Today both mothers feel that based on current research a viable treatment and one day a cure (at least for Megan's younger children) may soon become a reality. Dear Megan is an inspiring tale of two mothers and four sons who rise above the challenges of school systems and health systems, marriage, and life to find hope.
Synopsis
An inspiring collection of personal letters between two mothers of Fragile X sons offer hope and advice to all parents of disabled children as they as they join the crusade to find a cure.
Synopsis
Personal letters between two mother/activists of sons with Fragile X offer hope and advice to all parents of mentally challenged children
Synopsis
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
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.
Table of Contents
Introduction Every Mother Has A Story
Chapter 1 Welcome to FRAXA
Mary Beth introduces herself to Megan, welcoming her to membership in the Fragile X club.
Chapter 2 What the Blind Palm-Reader Saw
Fortune tellers, premonitions, and realities; coming to grips with the noting of having a retarded child, Mary Beth's own little 'pity parties' she used to throw for herself
Chapter 3 Fragile X Research 1943 to Present
It's a short history, but maybe longer than you think. Starting with Martin and Bell observations in 1943, Herb Lubs first noting of the fragile site on the X chromosome in 1966, CGG repeats, how far the medical profession has come.
Chapter 4 Diagnosis and Dealing
Having the original diagnosis done in Tulsa, how Mary Beth went from hating to loving Red Lobster restaurants, backtracking to the original diagnosis of MR on Robert in New York, hating the messenger, finding a nanny, learning that Jack also is mentally retarded, bed wetting.
Chapter 5 FRAXA'S Founding
What we do, how Mary Beth has come full circle to the realization that inheriting the Fragile X gene may be a gift.
Chapter 6 Lobbying
Mary Beth and Megan learn how to lobby Congress for research funding, aided by husband David in his retirement years.
Chapter 7 How Sweet It Is
Girls with Fragile X often have few if any symptoms. National Fragile X Foundation's conference in Los Angeles.
Chapter 8 Washington Life
Why it's special for Mary Beth and her family, even in the "slow lane."
Chapter 9 Right On, Megan!
Congratulating Megan for doing a successful fundraiser for FRAXA.
Chapter 10 Robert's Birthday
Trauma time, some years are worse than others.
Chapter 11 All that Autizzing
How Mary Beth's parents called her 'our strange child.' How strange she really was a Fragile X carrier, and how carriers can be symptomatic.
Chapter 12 To the White House
Mary Beth and David meet President and Mrs. Clinton
Chapter 13 Guilt Trips and Valentines
Megan's trip without the kids. Depression among carriers of Fragile X, including Mary Beth's mother's. Relationships with mothers, Megan's and Mary Beth's, the contrast. Lying to kids.
Chapter 14 So What Is Least Restrictive, Really?
The IEP (Individual Education Plan) process, inclusion, 1975 Congressional act to educate handicapped children, what's happened since, what does 'least restrictive' (educational environment) really mean? Is inclusion fair to normal kids? Basketball story from Maine.
Chapter 15 Let's Party!
How to win friends and influence taste buds. Why entertaining at home works for our family and how it can be done easily. Recipes.
Chapter 16 Your Tax Dollars at Work, Lobbying
The NIH, NICHD, NIMH. Banbury Research Conferences; Dr. James Watson. Current grants for Fragile X research.
Chapter 17 Guardian Angels and Messenger Angels
Jack loses his job, his job history, the problems mentally retarded have getting and keeping jobs. Berry-Kravis' research project in Chicago.
Chapter 18 Necessarily Delayed Gratification
Megan's big trip is cancelled. Get over it, make it up later, but make love now. Have a party as diversion.
Chapter 19 Mother's Day
It ain't what it's cracked up to be.
Chapter 20 Making Do with Make-Believe
What I coulda, woulda, shoulda said. Imaginary letters to the boys.
Chapter 21 Residential Placement
The world's most agonizing decision. How bad it is, how good it is.
Chapter 22 Right and Wrong Behavior
How responsible for their actions can our kids be? Taking our kids to church. Woman who told Mary Beth she should feel like a real freak.
Chapter 23 What's in a Name?
Changing from David Jr. to Robert
Chapter 24 To Have or Not Have
Another baby, Kelly tells her story.
Chapter 25 Riveting Research
More about Berry-Kravis's drug trial. The What-ifs, should a drug prove to be effective.
Chapter 26 Cooking as Therapy
Recipe for four-bean chili.
Chapter 27 To Boarding School
Megan takes Jack to school, the agony and the coming-to-terms
Chapter 28 Mary Beth's Excellent Adventure Dream
Sunday morning, church, Mary Beth's good fortune.
Chapter 29 On Marriage
Troubled marriages, Mary Beth and David's 40th anniversary, her views on marriage.
Chapter 30 'Tis the Season to be OVER
The end of the holidays, getting everybody back to her or her groove. The January blahs and blues. Prospects for the coming year.