s noted in my profile of editor and author Suzanne Kamata
, the premature birth of her twins and subsequent diagnosis of her daughter’s deafness and cerebral palsy led Suzanne to search for books that might help. “I was looking for deep and sustaining stories to guide me on the long path ahead,” she wrote in the introduction to Love You to Pieces: Creative Writers on Raising a Child with Special Needs
. “I needed to know that others had the same kind of pain, fear, and anger that I was feeling, and I wanted a better idea of how my daughter’s disability would affect my marriage, my son, my work, and other aspects of our lives.”
Finding few books that fit the bill, Suzanne set out to create one of her one. The poetry, personal essays, and stories that fill the pages of LOVE YOU TO PIECES not only serve to assure parents with children with special needs that others feel their pain, know their fears, and suffer through similar feelings of anger and outrage, they teach those of us who are not a parent to a child with special needs what is truly demanded, year in and year out, by our friends, neighbors, or acquaintances who face such challenges on a daily basis. I hope by spreading the word about this book at least a few people outside the world of special needs will read it and do what they can to help. Parents of children with special needs are strong and proud; they have to be. But they often could use a little help. Kudos to Suzanne and all the writers whose work appears in LOVE YOU TO PIECES for giving these parents a voice.
And for showing the magic that persists in the midst of some of the madness. In her incredibly memorable short story, “The Lives of the Saints,” Catherine Brady
gives the mother of a boy who suffers from spina bifida this lovely, heartbreaking line: “Danny can still be propped like a baby, the least of weights, a tow-headed fairy, less dense than we are, more pure, so astonishing he makes me wonder at the mystery of his making.”
In her own very personal essay about her daughter, Suzanne Kamata
writes that her daughter has taught her family “never to take anything about the body for granted, including the ability to breathe; that there is always something to laugh about; that there are worse things than being noticed by the neighbors; that you don’t have to be able to walk to dance….”
There’s so much more in this book, including:
Jayne Anne Phillips’s powerful excerpt “Termite’s Birthday,” which reveals the immense depth of a sister’s love (“I hear him smell the air like he’s drinking it.”).
Michael Bérubé’s “Great Expectations,” which celebrates a father’s fascination with and enjoyment of his unique son’s remarkable recall, conversational, learning, and teaching talents.
Penny Wolfson’s “Moonrise,” which makes it clear that anger is inevitable, especially when a teenage boy struggles to make his way when he can’t walk—and knows his type of muscular dystrophy will shorten his life.
Brett Lott’s excerpt from his novel Jewel, which gives a welcome sense of power to a group of devoted moms who just want to give their kids some time on a school basketball court.
Jane Bernstein’s “Mother’s Report” of “Rachel at Work,” which crystallizes the immense fear that there really is no safety net for a child with special needs once the parent is gone, especially with the present inadequacy of vocational programs for such children as they grow older.
Maggie Kast’s “Joyful Noise,” which allows a mother to admit her reluctance to trouble those around here by allowing her son with special needs to always fully participate in public outings. “Suddenly you wonder why you are often reluctant to meet people’s eyes. It’s a small and subtle thing, this avoidance…. If you focus only on [your child], perhaps no one will see you. … You are embarrassed to waste people’s valuable time. … You wish for a predictable sequence, like a meal. This event is bound to boil over.”
Vicki Forman’s memoir excerpt “Coming to Samsara” strikes close to my heart since I was familiar with Vicki’s writings a while back and mourned when her son, featured in this excerpt, died suddenly in July 2008.
All these parents have struggled and suffered and somehow redeemed themselves not only through their writings but through their immense love for their children. I don’t know off a more powerful force than that.