Now in his twenties, Clare Dunsford's adult son, J.P., was diagnosed with fragile X syndrome at age seven. The most common inherited form of mental retardation, fragile X affects the lives of more than a million people in the United States, including those with the full mutation, their families, and treatment professionals. Unlike autism or Down syndrome, fragile X does not strike like a bolt of lightning, leaving its mark on just one person; it spreads throughout a family like a tidal wave. When a child is diagnosed with fragile X, a mother faces the devastating fact that she carries the premutation and has unwittingly passed on the condition. When Dunsford first shared the news about J.P., three of her siblings soon found that they carried the premutation as well, and some had already had children-so three of J.P.'s cousins also live with the cognitive and social challenges of fragile X. Such a family must, Dunsford writes in her poignant, gripping account, "reexamine its past and reassess its future."
Spelling Love with an X is the first personal memoir about living with fragile X and a reflection on the fragility of human identity in the age of the gene. Recalling the psychic wound of learning that she is genetically "flawed," Dunsford wonders: What do you do when you discover that you are not who you thought you were? How do you tell your parents and siblings that they, too, might be implicated in your disaster? How do you make sense of a life interrupted, cast in a different light? How do you hold the sorrow and joy of a special motherhood in balance? Must we rewrite the old lines with a new (genetic) alphabet?
A scholar by nature and training, Dunsford draws on poetry and science to reflect on her life with J.P. and to illuminate his metaphoric way of communicating. Funny and touching stories show J.P.'s impressive verbal dexterity, not uncommon in those with fragile X, and his lovable cheeky streak. Eloquent and intimate, Spelling Love with an X reveals the disarming insights of a compassionate scholar on literature, genetic inheritance, and motherhood, and tells the story of a boy who is proud to be "just who I am."
Spelling Love with an X is the first personal memoir about living with fragile X and a reflection on the fragility of human identity in the age of the gene. Recalling the psychic wound of learning that she is genetically "flawed," Dunsford wonders: What do you do when you discover that you are not who you thought you were? How do you tell your parents and siblings that they, too, might be implicated in your disaster? How do you make sense of a life interrupted, cast in a different light? How do you hold the sorrow and joy of a special motherhood in balance? Must we rewrite the old lines with a new (genetic) alphabet?
A scholar by nature and training, Dunsford draws on poetry and science to reflect on her life with J.P. and to illuminate his metaphoric way of communicating. Funny and touching stories show J.P.'s impressive verbal dexterity, not uncommon in those with fragile X, and his lovable cheeky streak. Eloquent and intimate, Spelling Love with an X reveals the disarming insights of a compassionate scholar on literature, genetic inheritance, and motherhood, and tells the story of a boy who is proud to be "just who I am."
