Monday, April 25, 2011

Parenting without a manual

Originally printed April 28, 2010.

To describe Mary Kay Kusner's new memoir, "Upside-Down and Backwards," as "a quick, engaging read" is an amazing testament to the author's ability to guide readers through the emotional minefield of what it's like to parent a special-needs child.

After all, Kusner not only goes into personal details about the joys and challenges of raising Anna -- her fourth child -- but she also discusses her physician husband's successful battle with cancer, his later heart problems and the stress that caring for Anna places on their marriage. (And that doesn't even get into how she seems to throw in heady insights from Catholic theologians and counseling literature just for good measure.)

Yet nothing slows the relentless pace in which Kusner comes to terms with how her only daughter has turned her life upside-down and backwards. At times, Kusner reacts inappropriately -- making enemies out of the people who view Anna as "handicapped" or "disabled." At other times she comes close to wallowing in a type of self-destructive self-pity, brought on by excessive self-analysis.

But throughout this first book, Kusner shows she understands both the literary demands of the memoir as well as the wide range of emotions that come with caring for a child for whom there is no parenting manual -- a child with a unique chromosomal structure and for whom there is no diagnosis of what she is or isn't capable of.

It really shouldn't be surprising that Kusner feels so comfortable talking about the complexity of her emotions. After all, she has worked as a chaplain in both hospital and hospice settings. She has spent decades counseling families at their emotional breaking point and helped them deal with the consequences of losing a father, mother, sister or brother.

And Kusner wisely tries to recreate her own emotional rollercoaster by denying her readers any clear, chronological narrative. Shuffling time in how she presents her chapters, Kusner shares the emotional climax of hearing that her husband was in remission right before she describes what it is like to receive an amniocentesis report saying that her unborn daughter is going to be "normal" -- a report that readers know is tragically inaccurate because they've already read how Anna was born was with dangerously low Apgar scores and was in constant danger of death during her first year.

With each new problem coming so quickly, there's simply no time for Kusner -- either the literary narrator or the flesh-and-blood author -- to waste a lot of words describing each heart-wrenching episode.

Nor does Kusner have much patience to extend to the doctors who dismiss Anna's potential too quickly. And she has even less patience for the teachers who want to coddle -- rather than to challenge -- a young girl with a high receptive vocabulary but who only can say and sign a few words.

"Cute is not a coping mechanism," Kusner repeats as a mantra.

At first, it might seem that Kusner is writing "Upside-Down and Backwards" only to describe how she views Anna as some kind of a divine gift -- someone who has come to teach her family to look at their lives and their world in wondrous and devastating ways. And Anna, to the Catholic-raised chaplain Kusner, does become an object of devotion.

But Kusner also wants to describe how her object of devotion can be as much of a "brat" as any other child can be. While Kusner seldom has time for small talk with friends about town, she always makes time to chat with people in similar situations -- fellow parents who intuitively understand the "dark humor" that develops as an effective coping mechanism for responding to life's mix of horror and enchantment.

It's this dark humor -- always poignant, at times even sublime -- that drives Kusner's book and makes it a success hybrid of parenting manual, self-counseling handbook and spirituality journal.

To ask Kusner about her experiences firsthand, drop by her reading at 7 p.m. today in Prairie Lights.

Press-Citizen Opinion editor Jeff Charis-Carlson can be contacted at or 887-5435.

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