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!
6 comments:
Okay, I love that phrase about crying...I need to steal it too.
You can just tell from the photo that you two get along so well and understand each other. What a blessing to have them in your life!
That is a great saying!! Ella is a doll and I'm glad you were able to meet them!
Give sweet Jonah a kiss from Team A!
Love,
Laura
That's great! I'm so glad you got to meet them! This post makes me smile!
Hi Patrice: What great pictures of the four of you. I met Katie and Ella down in DC at the Senate hearing. Katie and Ella are something very special, like all EB families I'm finding out.
Take care and give Jonah a big hug and kiss for me. Love you guys. Love Leah's Nana
SO awesome that you guys got a chance to get together! What precious time that must have been! :)
How wonderful that you guys had the oppurtunity to spend time together.
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