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 […]
Baby Knox
In April 2011, our baby boy was diagnosed with a rare genetic disease called Cockayne Syndrome.
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
Jewelry Pouch with Felt Birds
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 […]
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, […]