Baby Knox
In April 2011, our baby boy was diagnosed with a rare genetic disease called Cockayne Syndrome.
On The Inside
One day, it’s a happy post. The next day, a sorrowful one. What can I say? It’s my blog and I can cry if I want to. On the inside, I’m crying quite a bit. This drawing isn’t supposed to be pretty. I was only trying to show how it feels when I […]
Knox at 9 months
You knew I had to put up a picture of Knox for the letter “K” ! The little dude is still not eating on his own. I offer him the juiciest apples and sweetest pears, and he’ll eat a few bites for us. But not enough to get off the feeding […]
Genetic Mutations
Genetic Mutations. Ugly sounding words, but they are very much on my mind these days as we await our son’t DNA test results. What are they? I’ve been reading a lot about genetics lately, as you can imagine. I don’t understand everything, but I’ve learned this much: A hereditary mutation, which […]
Rare Disorder II
Yep, still in the hospital with baby boy. I had to bow out of the “A to Z” challenge for obvious reasons. This is one of those times when art is the only way I can express what’s on my heart.
“Rare Disorder”
I’ve been in the hospital with my baby son for 5 days. He stopped eating and they suspect he has a very rare genetic disorder…. And I don’t know what else to say.
A Giraffe and Some Elephants
Have you seen this tiny giraffe baby teether from France? She is quite famous across the pond. Baby K. got his very own little “Sophie la girafe” yesterday–ooh-lala. We enjoyed watching the video of how Sophie is made, and watching K. try to eat her hooves off. Speaking of giraffes, I […]
Winter Dandelion
Two days ago we were wearing shorts and blowing the feathery seeds off of dandelions in the yard. Today, it’s 17 degrees and we’re walking around the house bundled up in robes and fuzzy pajamas. That’s a Texas winter for ya’. It’s been a happy week for us around here. […]
Pink Tulips
There’s something about the way sunlight kisses the petal of a flower… I stoop down low. I stand on a chair. I dance around the table and take 10o pictures. I thank God that I can see flowers, and pray that baby K will be able to see them someday. I looked down and […]