The backpack Emma will carry on her shoulders her whole life is Down syndrome. She will make her way through the world, accomplish many of the things her siblings do — but always with greater effort, because of that weight she bears. Her parents and many others can help her, but they cannot carry the backpack for her.
Fuga writes about Emma, her second daughter born with Down syndrome, in a spare and direct style — quite different from other books in this genre. There is no sentimentality here, no dramatic flourishes. At times, the flat tone makes you worry you're reading the words of an unaffectionate mother, so matter-of-fact is her account of episodes and feelings.
But something else emerges, powerful and genuine: a profound love for her daughter, and beyond that, an honest recognition of Emma's achievements and a full acceptance of her disability. Fuga makes a sharp distinction between her daughter and her daughter's condition. She crystallizes this in a luminous phrase: "Down syndrome is not a gift. Emma is a gift."
The result is an almost pedagogical book — one that can offer hope and confidence to parents walking this road with a disabled child. Fuga writes openly about how she has changed, and about the good that this journey has brought her. Good things she would, however, gladly give up if it meant she could lighten her daughter's load.
Rita Massi, 2015