Bohring-Opitz Syndrome Foundation, Inc.
"The Best Life for All Families Living with BOS"

Awareness Initiatives

Raising awareness, one person at a time!

Beautiful Artwork Influenced by BOS

As an artist and mother of  Miranda, a child with BOS who is now 15 years old, I have not made a work since her birth in 2004, which was not somehow influenced by her.  I began graduate school when she was six months old, long before we had a diagnosis, a diagnosis that was not confirmed  until 2013. My graduate work is full of the influences of being her mom, her machines, and her times in the hospital.  As she grew older and I became more accustomed to being her mom, the work began to include more of the everyday: a walk, an architectural discovery. The language of my influences changed a little bit, but never without her, she loves discovery, her eyes light up for jelly fish, for old planes, for butterflies... 

I have recently created a group of new work representing the new now. Another big challenge is in front of us. Her scoliosis is growing to the degree where I need to decide if it should be fused. The doctors actually leave that up to me, her parent. What will be her quality of life? What will it be with or without it? That decision is overwhelming me. It has become the impetus of these four works.

The sweeping marks in the work are made with a broom, an everyday tool that deals with every day life. These marks were made vertically, as her spine would be, and then rotated to become the horizon line. This ambiguous horizon line is how I live. 

I live in a place where some things are unclear, some things are hopeful, but most are unsure. My horizon is a place of mystery and hope; it is actually a very true place of being Miranda’s mom.  How will tomorrow play out? 

The world of painting that happens around and on top of these marks give freedom for everyday memories and stories to play with while I work, many are Miranda’s stories.

These works will be shown in my first solo show in California, opening May 3, 2019. I am so grateful to be raising awareness through this work.

I have a studio here in Seattle in Pioneer Square. All those who visit me during our first Thursday Art Walk, learn a glimpse of Miranda. She is continually gaining a love support here, raising awareness of BOS.

Thank you for the opportunity to share a bit of this story.

image list:

to think that I saw it, a camel, a hedgehog and what? through the eye of a needle,  53" x 59", ink, flashe, oil on linen. 2019

babbling at tower's base, singing at the top, 53" x 59", ink, flashe, oil on linen. 2019

if it weren't for the fish swimming around my knees, 53" x 59", ink, flashe, oil on linen. 2019

a wrinkle, a tesseract, string cheese, 53" x 59", ink, flashe, oil on linen. 2019

Taylor GurganusComment