I make cards to raise money for medical research. I stamp, color, cut, layer, and glue. Then I cut some more. I sell these cards in my little boy’s Etsy shop, and then send all the proceeds to fund Cockayne Syndrome research. Please pass along the link to Knox’s shop! […]
Baby Knox
In April 2011, our baby boy was diagnosed with a rare genetic disease called Cockayne Syndrome.
Photos from the CS Retreat, Liverpool, and New Brighton
I flew over to England with Knox for the annual Cockayne Syndrome family conference. It’s put on by the CS support group, Amy and Friends, and helps connect families from all over the world who have children with this rare genetic condition. The friendship and love we shared with other […]
Turtle Painting for Knox
I’m FINALLY done! Here are some of the photos I took during my progress. My studio was my bedroom floor… I decided at this point to make a barely perceptible face on the girl. If you walk by and just glance at the painting you’ll never notice it, […]
Published in Artful Blogging, Fall 2012
What a cool birthday present. I came home from California and saw my blog published in Artful Blogging, just in time for my birthday on Sunday. Now that’s better than a big piece of cake! Thank you to editor, Jennifer Taylor, and everyone at Artful Blogging for including me in […]
Happy 2nd Birthday Knox!
My sweetie pie, Knox, turned 2 this last weekend! He stared at his cupcake… And then tried a little bit of the sweet stuff… We had lots of fun celebrating with family. He shares a birthday with his Great-Grandmother. He turned 2 and she turned 83… Then just a couple […]
One Year Since Diagnosis
It’s been a little over a year since I found out that my baby boy is rapidly aging. This disease called Cockayne Syndrome is the worst thing I’ve ever seen. A fellow CS mother posted the question on FB recently, “Why would such a thing exist?” And I echo her: […]
One Wish
Painted Butterfly Luggage Tag
Does this luggage tag say ‘fun and adventure’ to you? Nope, I didn’t think so, either. I’m already anticipating lots of fun and adventure as we travel to both worldwide Cockayne Syndrome retreats this summer. The first one’s in California and the second, in North Wales, England. These are special […]
Visual Contrast Book for Baby
I recycled this old photo album into a visual contrast book for Knox. We’re not sure how much he can see, but we know he sees something! And he seems to enjoy looking at high contrast images. The Baby Symbolizer app. keeps him entertained for a while, but real books […]