By Maura Weis (Sorin Books/Ave Maria Press, 2008)
Miles from the Sideline is an appropriate title for Maura Weis’ account of life with her daughter, Hannah, who has severe global developmental delays caused by a rare seizure disorder. The wife of Notre Dame football coach Charlie Weis, Weis’ struggles as a mother and as a Christian are no less Herculean than those of the most committed athlete, but they occur in a more private realm.
Weis describes her journey from the parent of a child who seemed happy and typically developing until the age of 2 to a thoughtful, clearsighted, and passionate advocate for her daughter and others with special needs. Her first challenge, as for others of us raising children with intensive special needs, was to engage in a revision (literally, a re-seeing) of her notions about her child, herself, and what God was asking of her in her life. Her honesty about the suffering involved in that process—engendered by fear, self-doubt, confusion, grief, resentment, exhaustion, and the insensitivity of others—will be appreciated by anyone who has traveled her path.
But the story Weis recounts is ultimately one of spiritual development and of pain transformed through the redeeming power of love. In experiencing firsthand the worth and the dignity of her daughter, Weis comes to recognize the bit of Christ value in every person.
Hannah calls forth from her mother qualities and capacities that Weis might otherwise never have known she possessed, including a capacity for unconditional love, for living in the moment, and for advocating with boldness and confidence on behalf of her daughter and other people with special needs.
All of the author’s royalties from this book will benefit Hannah & Friends, a nonprofit foundation dedicated to raising awareness about children and adults with special needs and improving their quality of life. Learn more by visiting hannahandfriends.org.
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