This was my favorite Christmas present: A lovely seed pearl necklace with silver charms. It was given to me by my husband’s mother and I love it so much. I love layering it with other necklaces, but more than that, it’s extra special to me because it represents my […]
Baby Knox
In April 2011, our baby boy was diagnosed with a rare genetic disease called Cockayne Syndrome.
A Shadow Lurking
All the festivities of the season aren’t able to keep away this melancholy. It comes and goes. I’m working on some miniature hot-air balloon ornaments that are turning out really cool so I’ll be sharing those soon. But not today. This month is already proving to be more difficult […]
Starting A Memory Album
I love Knox so much. Losing him doesn’t seem possible… He had his first ear infection last week but he’s feeling better now. His intake went critically low, but he managed to stay hydrated and has managed to take in almost 11 ounces of Pediasure today on his own. I […]
Knox turns 15 months
My little angel, Knox, turned 15 months last week. Yep, his hair is still as crazy as ever! We celebrated by driving to Morgan’s Wonderland in San Antonio. While we were there, we had the opportunity to meet an adorable little girl named Grace. Aren’t they sweet? They aren’t related, […]
“Lady in a Marsh” Sketch
Love
This is one of my favorite pictures because it’s a picture of LOVE. Knox, on the right, is my special little angel with Cockayne Syndrome. Currently, there are about a dozen children with his type of CS in the United States. His big brother adores him and wants his picture […]
Happy First Birthday Knox!
Brightly colored streamers hanging in the windows….I think they were Knox’s favorite party decorations! He was able to see them really well when I opened the blinds. Here’s what I did with the leftover crepe paper rolls. Kinda cute? Happy Birthday Baby Boy! We celebrate the joy you’ve brought into our family and the […]
“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 […]
“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 […]