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 […]
Baby Knox
In April 2011, our baby boy was diagnosed with a rare genetic disease called Cockayne Syndrome.
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 […]
Sketch of Knox in the Hospital
I had the previous post ready to go when I got home tonight but I’m actually just home from the hospital. Dad is taking a turn so I can get some fresh clothes and see to the others. Knox is having a severe reaction to a virus and isn’t eating […]
New “Stare Cards” For Cockayne Syndrome
Last summer, I made up some ‘stare cards’ for CS to hand out when I have Knox with me. I have passed out lots of cards in the last few months. Yesterday, some other CS moms expressed interest in these on Facebook. I worked on them all evening, re-working the […]
A Heart in Pain
Several trips to the pediatrician’s office have sent me spiraling. So many bad memories in that office. To make matters worse, I also have guilt. In anger I’ve lashed out at some of the nurses. I’m sorry.”No! I said I’m not going to undress him.It’s cold in here and I […]