Last Friday, we had very special visitors. Ella and her beautiful mom, Katie, came for a visit. Ella has Recessive Dystrophic EB, and Katie was one of the first EB folks to contact us after Jonah was born. Katie has been a constant source of support and love (and a POSITIVE outlook) for us, and it was SO AWESOME to finally get to meet them. They were down here from DC visiting some family in Durham.
We got to enjoy a great walk with the kids. It was a beautiful day.
Sweet Ella. Three years old with the vocabulary of a nine year old. :)
The four of us. (Jonah playing with Katie's earring... no concept of personal space.)
It's nice to spend time with someone who really gets what your life is like... not just the physical requirements of EB, but the emotional ups and downs of being an EB mommy. We didn't really have to do introductions or small talk. (I did cry a little bit, but that's kind of my thing. When I apologized for crying, Katie said, "Don't worry. Crying is my spiritual gift." Ha ha. I'm stealing that one!) We just got each other. And Ella is just as amazing as Jonah and Weston (an EB not-so-baby we met last year). The strength and determination of these EB
kids young people (sorry, Weston) continue to blow me away.
We love you, Katie and Ella. Hope you come back down our way soon!