The upside of Down
A sophisticated memoir captures the poignant affections that arise nurturing a child born with Down syndrome.
November 13th, 2015
Kari Burk, a landscape gardener and artist in Castlegar, lives with her 25-year-old daughter, Mielle, after moving to the Kootenays when Mielle was 16.
Born with Down syndrome in 1990, Mielle Burk had open heart surgery at eight months old to repair her atrioventricular canal. Her second heart surgery at age twelve was more difficult. In Kari 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.
Editor 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 longstanding 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.
Kari Burk was born in Calgary in 1962 and moved to B.C. 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 B.C.