A Castlegar mother has written a book about raising a daughter with Down Syndrome.
Kari Burk is a local artist, writer and landscaper who’s published Snapshot of a Soul Place in the Land of Special Needs, a book about her 25-year-old daughter Mielle, just in time for Down Syndrome Awareness Week, which is taking place from Nov. 1 to 7.
“We worked on it for four years, five years, and it was the idea of the editor Valley Hennell,” said Burk.
Hennell is married to Rick Scott, a children’s entertainer and Mielle’s grandfather. She edited and curated the book, which contains Burk’s poetry and artwork.
“She had this idea to do this book about Mielle, but also about all the art that is around her,” said Burk.
Mielle is surrounded not only be her mother’s artwork, but by her grandfather’s music.
When she was a child, Mielle stared in a music video for “Angels Do,” a song Scott wrote about her. The video was shown on Treehouse 20 times a month for 10 years, and became one of their most requested videos.
Mielle is close to her grandfather and loves to sing and perform. She’d like to be in a girl band one day.
“She is all about the music and dancing. I’ll hear her practice in her room…. I’ll be watching a hockey game and she’ll be practicing for that amount of time. Like two hours of singing,” said Burk. “And she’s got the pipes.”
The book is also about Mielle’s family and friends.
“The book is really a lot about gratitude for all the different people that have been in Mielle’s life that have helped her,” said Burk, “because of course when you have Down Syndrome, you need a lot of help, you need a lot of satellites of love to help you on the way — I mean we all do, but I think people with special needs need it more so.”
Burk and Mielle moved to the Kootenays in 2006 and Burk has been delighted with the support they’ve received from the community.
“[There’s been] big support and acceptance in our community. It’s beautiful when you can feel that because you feel vulnerable, and I’m sure Mielle feels vulnerable too. She’s very conscious of people who stare and she used to say to me, when she was younger…, ‘I don’t like the kids eyes,’” said Burk.
She believes that the more people learn about those with Down Syndrome, the less they’ll be afraid and the more support there will be.
“We’ve come a long way, but we need to keep going,” said Burk.
Burk also wrote the book as part of a kind of chain. When Mielle was first born, Burk and her husband were given a book called The Birth of Martha, written by parents of a Down Syndrome child. Later, they were given another book called Our Brother Has Down Syndrome. Now Burk has created her own book for families in 2015 and beyond.
“We were hoping that our book could maybe be given to parents, you know, be at hospitals, and given to midwives,” said Burk.
Burk has already done some book launches on the coast, but Snapshot of a Soul Place will also have a launch in Castlegar at the Castlegar Public Library on Saturday, Dec. 5 at 11 a.m. The book is currently available for $30 at Café Books, Kootenay Gallery, and Kootenay Society for Community Living in Castlegar, and from www.snapshotofasoulplace.com.