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 […]
Tag: cockayne syndrome
“Cards for Cockayne Syndrome”-Etsy Shop Up!
Knox turned 11 months old this last week and we love him more than words can say. But time is not on our side. Already, the physical changes that come with Cockayne’s are becoming more noticeable. My heart hurts to see these changes. His hair is thinning, his eyes are […]
Antique Butterfly Postcard
Look what I found! I came across this precious Ellen Clapsaddle postcard in our local antique mall. Oh my goodness, my heart skipped a beat when I saw the tiny butterflies being painted. Being well over 100 years old, the copyright on this image has expired, so you can already guess that I […]
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 […]
Butterfly Cards for Cockayne Syndrome
The butterfly is the symbol of those whose lives have been cut short by Cockayne Syndrome. Since baby Knox was added to Amy and Friends worldwide support group I’ve been connecting with other families around the globe who have traveled this journey. I’ve been looking for answers, searching for something to ease the pain of this […]
All The Words You Said
EAT THEM. Yes, YOU. Eat them all. You said,”It’s not God’s will for your baby to be sick.” You said, “Knox will thrive and grow, in Jesus’ name.” You even said God would give him new DNA. You said I needed to CLAIM the promises that are available in Christ *in order […]
Now We Know
Now we know what’s wrong with baby Knox. His DNA results came back and he has Cockayne Syndrome (Type II). It is a premature aging condition. It’s degenerative and terminal; currently, there are no treatment options available. I knew it was going to be something serious, but deep down, I had still hoped we […]