Sunday, March 27, 2011

natural history study: take 3

headed back to oakland for the semi-annual natural history study for rett syndrome. last march was our first visit and my emotions were all over the place. it was then we met sweet avery and her incredible family and everything seemed okay. so this visit marked our one year anniversary. how cute.  

we went back in october for our second visit and it was indescribably better knowing what to expect and knowing more families. 

this, our third visit, continued the trend. i knew most of the families there and even felt at little at home. being in a room full of people who are dedicated to bettering life and finding a cure for leah is a feeling i can't describe. 

she met with dr. neul this time. although she missed her boyfriend, dr. glaze, who couldn't make it, dr. nuel was a great second best. my favorite comment from him, "she sure breaths a lot, doesn't she?" um, yes. she does. 

and this time, we weren't the newest members of the club. we met a darling family from utah with a daughter named lucy. she was probably the cutest three year old i've ever seen. talk about a small world, her dad grew up just east of where i did and went to high school with my cousins! they live about a half hour from my mom's house and we chatted about all things utah for quite some time. they had so many questions and are still kind of in the thick of the regression that we're now crawling out of. it honestly felt so good to know that i can now be a support to someone else. that i'm not just relying on others and asking them questions, but i can also be relied upon and share what we've learned. this particular family also shares the same religious beliefs as we do which is just an added blessing. little lucy has two amazing parents dedicated to her growth and development as well as two super handsome older brothers that simply doted upon her. she's a lucky little girl. and i'm so happy to have met her!

after the study, ryan took leah home and colleen and i stayed for a parent meeting where i sorted out some final thoughts on my government funding predicament. i'm feeling good about my decision and how we'll proceed to help give leah the things that she needs. and a lot less stressed. at dinner just before the meeting, colleen and i found the best parking spot ever. good thing they marked it compact. we were in a SMART CAR and didn't even fit in the lines. the couple next to us in a mini cooper didn't even stand a chance.


Erica said...

1. will you give me lessons on how to remember to take pictures of everything so that I have actual pics for my blogs posts too?

2. our hair is the EXACT same color.

3. I have mom hair, you dont. point goes to you.

4. I love you!

Molly said...

I totally noticed that you guys had hair the exact same color.

I'm so glad to hear that you guys are able to support another family like you did. I'm sure they will appreciate that for the rest of their lives.

Valerie said...

This reminds me of my brother and sister-in-law. They have a little boy with autism and went to their first conference so scared and emotional. There was just another one, several years later, and my sister-in-law was able to comfort and educate a woman whose child had just been diagnosed. How wonderful to be a part of a support system! I'll have to read more about Rett syndrome because I've heard of it, but don't know anything.
(Found ya on MMB's Post of the Week and just poked around your blog a while)