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 seems […]
In April 2011, our baby boy was diagnosed with a rare genetic disease called Cockayne Syndrome.
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.
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.
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 […]
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. […]
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 […]
It’s hard to believe baby K is 4 months old. You know what’s even harder? Getting a decent photo of him! Weighing in at a little less than 11 pounds, he’s still a small fry, and difficult to keep happy for long. We think we catch a glimpse of a […]
I’ve been here before. It’s a desert place. A valley of shadow. A long night… I pace back and forth with baby. I haven’t had a full night’s sleep in over 3 months. I hear voices “You’re not a good mother. What’s wrong with you? Why can’t you get this […]
Baby’s pretty cute these days. Getting little rolls on the arms… And getting really chunky here… Couple of dimples here… And sweet plumpness here… But baby’s eyes…. Baby’s eyes don’t meet mine anymore. They’ve gone cloudy. The first two surgeries didn’t work. So he’s having two more surgeries very soon. I’m […]