The Ben Book: A father's memoir (Paperback) (ISBN-13: 9781760418861)

On one level, Benjamin Bede Galvin lived his own unique and special life. As his father, I coped (or did not cope) as best I could with being his father, and my story is also an idiosyncratic one. Yet on another level, we are both representative of concentration points of our times. Benjamin was a textbook case of a boy, and then a young man, with Duchenne muscular dystrophy, and what it means to live and die from this disease, in Australia, in suburban Adelaide, at the end of the twentieth century and the beginning of the twenty-first. And I am his ageing baby boomer father, handed a script I cannot change very much, from the moment of diagnosis when he was a year old, to the present moment, when I cannot imagine any future day in my life when I will not feel some pain of his loss.