Author Tags: Health
Kari Burk’s illustrated memoir, Snapshot of a Soul Place in the Land of Special Needs, was honoured with a 2016 Academics’ Choice Award in addition to National Parenting Product (NAPPA) and Family Choice Awards. Written and illustrated in Castlegar, it was edited, curated and published by Valerie Hennell and designed by Ronan Lannuzel on Protection Island in Nanaimo, B.C.
Kari Burk is a landscape gardener and artist who lives with her adult daughter, Mielle, in Castlegar, after parting company with Mielle’s father on the coast and moving to the Kootenays when Mielle was 16.
Born with Down syndrome in 1990, Mielle had open heart surgery at eight months old to repair her atrioventricular canal. Her second heart surgery at age twelve was more difficult. In Burk’s family-published memoir, Snapshot of a Soul Place: In the land of special needs (Grand PooBah Music Publishing / Friesens $30) we learn it is common for people with Down syndrome to have heart problems.
After Snapshot of a Soul Place in the Land of Special Needs won a 2016 Family Choice Award during the 21st year of competition to recognize the best in children's and parenting "family friendly" products, it won a 2016 National Parenting Product (NAPPA) Award.
Editor and co-writer for this remarkably intimate book is Burk’s mother-in-law on Protection Island, Valerie Hennell, who is married to folksinger Rick Scott, aka Grandpa Jumbulz. Because of his special needs granddaughter, Scott has become a Goodwill Ambassador for the Down Sydrome Research Foundation. Scott’s song for and about Mielle, ‘Angels Do’, now serves as an unofficial anthem for people with special needs. A video of the song starring Mielle ran on Treehouse TV for ten years (now viewable via YouTube).
“I realized,” writes Scott, “that for better or worse, our family had been given an angel. But this is not the Hallmark card kind of angel. Instead of wings, this angel would have scars. She couldn’t fly but would walk on the earth and people would not want to look at you, or worse, would stare. Often you would be shunned.
“This angel would teach me new ways to laugh and cry and show me a world I never knew existed. At the end of the day you’d be exhausted but perhaps your heart would be a little bigger and you’d have discovered a new understanding of the word ‘compassion.’”
Published to coincide with Down Syndrome Awareness Week in the first week of November, Snapshot of a Soul Place amounts to a life story told from the different angles of people who love and respect Mielle, replete with 40 original paintings and 60 photos. It’s the first book from Hennell’s company that also handles Rick Scott’s musical catalogue of 18 recordings and his musical audio novel, The Great Gazzoon.
In her narrative that is as informative as it is touching. Burk describes how babies with Down syndrome often have difficulty breastfeeding due to hypotonia (low muscle tone). Mielle’s heart condition also made her tire easily so she had difficulty latching on in order to get enough milk. Visits to the Vancouver Breastfeeding Clinic proved beneficial. Burk also credits the Vancouver Infant Development Program, sign language classes and the supportive climate at Lord Tennyson Elementary.
“Perhaps the greatest obstacle faced by a person with special needs,” Burk writes, “is being misunderstood and in turn, isolated, from life’s processes and events.”
Snapshot of a Soul Place is more evidence that many of the best books in B.C. are being self-published by sophisticated folks who deeply care about their subject matter, and take years to bring their passion projects to fruition.
Funding agencies, merchandizers and professional organizations like to pretend that such useful and heartfelt books as Snapshot don’t really exist, or that they are deservedly marooned below the media radar because they are nearly always second-rate—as if desire for profit is somehow a superior measuring stick for quality or public value. This is daft and false. But such prejudices—mostly in the name of commerce—persist.
Snapshot of a Soul Place in the Land of Special Needs also won a 2016 Family Choice Award during the 21st year of competition to recognize the best in children's and parenting "family friendly" products.
Kari Burk was born in Calgary in 1962 and moved to BC in 1968. As a landscape gardener, she operates Muddy Tutu, Organized Grime and Garden Art in Castlegar. A graduate of Emily Carr School of Art and Design, she previously self-published 14 chapbooks of poetry and exhibited and performed throughout BC.
Autobiography / Family / Developmental Disability
96-page hard-cover (SRP $30)
8.25” x 8.25” with 40 original paintings and 60 photos
Written and illustrated by Kari Burk.
Edited and curated by Valerie Hennell.
Grand PooBah Music Publishing: Nov 1, 2015
96 page hard cover with 40 original paintings and 60 photos.
Printed in Canada by Friesens.