“Love You to Pieces” edited by Suzanne Kamata
Coming from and living in a family with at least its fair share of mental and physical “issues,” when I first read about this book in the Daily Yomiuri, the title, Love You to Pieces, leaped out at me like some secret code–oh my gosh, whoever wrote this MUST understand, and I wasted no time reserving a copy on amazon.
The book arrived and I jumped right in reading half of it before mental exhaustion forced me to put it down for another day. Editor and contributor Suzanne Kamata explains that when her own daughter was born with cerebral palsy she looked “for deep and sustaining stories to guide me on the long path ahead, and while I found many cheery volumes offering hope and inspiration, that wasn’t exactly what I wanted.” This reminded me of when my own children were born and I looked desperately but in vain for a book that would explain the matter of babies who cried most of the night. My suspicion was that there was no solution to the problem, but I wanted an author who would say, “The mother with such a child will find herself desperately sleep-deprived. Your baby may be in some discomfort from colic, but you yourself deserve a gold medal and peace and quiet for a good, long nap.”
In a word, this is what we get from Love You to Pieces. We find that parents of children with disabilities are not saints God has ordained for this particular role, but people struggling with what life has dealt them in the form of their own children–the little (and large) beings they love best in the world, but who have brought with them an entire array of emotions and dilemmas and obligations from which their parents will never be free. You might even go so far as to call this book a Pandora’s Box for parents of children with special needs. Just as the mother of a baby who will not sleep through the night must never find out that she actually deserves to sleep, once parents discover themselves in any of these stories, and find the self-doubt and struggle they face every day are shared by others (i.e they are normal), there’s going to be no shoving them back inside and slamming on the lid and going back to pretending that if they just focus a little harder they really can take care of all this on their own, everything is just fine, thank you.
The stories are arranged in order of the child of the main character. The early years produce prose that is almost too painful to read, and just getting past the first story, “Coming to Samsara” by Vicki Forman, who writes about the birth of twins born several months prematurely, requires an act of faith. Women very close to me have had similar tragedies. The agony the mother goes through is so raw, but I want to hold the pain and disbelief inside, so I can somehow come close to sharing it. “So this was what it was like…”
“”Severe Language Delay”: in the Kitchen with My Three-Year-Old” by Rebecca Balcarel is a very short poem that beautifully sums up memories of my nephew who was born with a cleft palate. At three he was quite the conversationalist, and my sister seemed to navigate it all so smoothly even though there was rarely a hint of a vowel to cling to for support. The process Balcarel uses to understand her child, and so succinctly describes, is complex, but I imagine it took place within a matter of a few seconds– and was repeated hundreds of times a day.
“Ordinary Time” fiction by Carol Zapata-Whelan is about a household in chaos. This story showed me someone who did not appear to be fully in control of her life or her family or even herself, but she was somehow muddling through and, in the process, providing a loving environment for her son who suffered from a progressive disease. Indeed, her own failures left gaping holes large enough for others to step in and lend a hand. (A must-read for anyone for whom pictures of the Duggar family, lined up and perfectly coiffed, brings on hives.)
Three of the final stories, “Rachel at Work: Enclosed a Mother’s Report,” a memoir by Jane Bernstein and “What About Meg?” fiction by Curtis Smith, and “Joyful Noise” fiction by Maggie Kast, about adult or almost-adult children, resonated with me, and I was satisfied that nothing was tied up with ribbons and bows. Although the unremitting self-doubt and questioning is beginning to settle down, problems and issues remain; the parent begins to accept and yet still reveals his or her humanity.
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