We traveled over to North Wales last week to attend our second Amy and Friends Annual Cockayne Syndrome Family Conference. My son, Knox, has a severe form of Cockayne Syndrome. It’s a terminal condition that is causing him to age faster than normal. Instead of growing, gaining weight, and reaching […]
Tag: genetic disorder
One Wish
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 […]
My Butterfly
“Lady in a Marsh” Sketch
“Stare Cards” for CS
I wish people would stop staring. I designed some cards to give to people who stare at Knox. It’s happening more and more frequently. People can’t help themselves. Their eyes keep looking over at him. They don’t say anything but their eyes ask the questions loud and clear. “What’s wrong with that baby? Is […]
She Sees Pain in the Mirror
Some days are better than others.
Butterflies of Denmark
I’ve continued reading about other families who have had children with Cockayne Syndrome. All the stories are hard to read and I always cry. But ignorance is not bliss with this disease. I need to know what to expect so that we can give Knox the best care that we can while […]