Sunday, August 19, 2012

Miss H

I've started to write this story about five different times, and nothing seems adequate, so we're just going to go ahead with mediocre. I often lack the words needed to describe my feelings when it comes to this topic. 

But this story is of a little girl. A little girl with a loving mom and a doting dad and an ever-so-handsome little brother. A little girl who loves her family. And has curly pigtails. And wears twirly dresses. And loves her sippy cup. A little girl who has a beautiful smile and sparkling eyes. A little girl who has Rett syndrome. 

This little girl, Miss H, was a joy. Her mom found my blog a few months back and reached out to me. They lived far away, but we corresponded via email. We shared our stories, and we shared our tears. She read about Leah and I about Miss H, who is about three years younger than Leah, and the similarities were jaw dropping.
Then they moved to Utah and we vacationed there - it was too perfect to pass up. So we spent a Sunday evening in the cool breeze in my mom's backyard, chasing our girls, sharing stories and eating fresh peach cobbler {because that makes everything better}. They asked a lot of question and we had some answers. It brought back a flood of memories. Some good and some that were so awful we had actually blocked them from our minds until that moment {p.s., J, a leotard is SO smart!}. 

But mostly it was good to meet yet another family who we felt an immediate bond with. Another family who had the same fears and frustrations that we had a few years ago. Another family who has the same love for their daughter despite their dashed dreams. And it was fun for me to be able to share a small bit of this world with part of my own extended family who happened to be there.

Miss H has tested negative for the gene mutation but will most likely have a clinical diagnosis. She will be visiting the beloved Katie's Clinic in Oakland and I'm so excited for them to meet even more of our wonderful Rett family there.

There is so much I didn't share about this evening. So much I'm unable to share. I honestly don't have the words to describe what it feels like to meet other families in our Rett syndrome world. I think probably because that world doesn't communicate with words. We communicate with eyes and feelings and experiences - and that transcends to every member of the family, not just the girls. But words or not, we are so happy to to know Miss H and her fabulous family. And although we wouldn't wish anyone membership in this club, we welcome them with open arms.


Amy said...

...and this is why I'm running. What a beautiful girl. the rett community seems very tight - such a blessing among so much hardship.

Erica said...

ok now Im crying. the ryan at the airport pics and then this. i know exactly what you are talking about and you know i know b/c you guys did that for us and us for you! this totally brought me back to that breezy day we had you guys over for lunch! im so glad you got to meet this sweet family! I have been talking to mom and am looking forward to them being embraced by more open arms soon! they are so lucky to have gotten to hang with the laytons!

Colleen said...

oh, my heart breaks when i read this. it just doesn't seem right that any other families should have to get this diagnosis. i'm sure they were so encouraged meeting you guys and leah. she is like a little ray of sunshine. and that miss h is adorable too!