Mariagrazia is thirty-three years old and has Down syndrome—severe enough that she cannot speak. She is the subject of this book, written by her sister Fiorenza and Fiorenza's husband Ivano, who serves as a brother in all but blood. Together they tell their story with a clear purpose: to illuminate the often-overlooked role of siblings in families touched by disability. They write about the emotional weight that siblings carry—the unspoken knowledge that one day they may bear the full responsibility for their disabled brother or sister. Their perspective is vital. Siblings see what parents cannot always see, and they live with burdens that deserve to be named. This book matters for anyone who works with families that include a disabled member, and especially for those siblings and in-laws whose clearer, less entangled view of daily life can help the family navigate what lies ahead.
Cristina Tersigni, 2005