Monday, April 12, 2010

see mj write: day 12 {whatever tickles your fancy}

you know who tickles my fancy?


usually. she didn't tickle my fancy by screaming bloody murder and not falling asleep until 10pm last night, but usually she tickles my fancy.

rett syndrome does NOT {with a capital N, O and T} tickle my fancy. but leah does and she has rett syndrome. so, if i have to choose one thing about rett syndrome that tickles my fancy, it would have to be the people.

i've met, in person, a handful of people that are simply amazing. and i know, were it not for rett, we never ever ever would have had the pleasure of becoming acquainted. i've also met, via internet land, lots of other families and incredible people; and i hope to be able to meet them all in person one day.this past weekend, we were able to spend time with another rett family. they live relatively close by and we met at the natural history study last month. i was blown away with the similarities between leah and their daughter. let alone the similarities between myself and the other rett mom. i was a little nervous to go to their house. we had exchanged lots of emails over the course of those few weeks - felt a little bit like my pen pal days from mrs. green's 3rd grade class at heartland elementary. but the actual meeting day had all the anxiety of an eHarmony date. will they like us? will i say something silly? are we going to have things to talk about for the entire afternoon?

well, i think they liked us. and if they didn't, they put on a good show.

i probably said something silly. i usually do. but they didn't seem to mind.

and we definitely had things to talk about for the entire afternoon. and many more afternoons to come.

it was so fun to see leah play the same way another little girl plays.
it was so nice to have leah lick their kitchen table and have it be completely was wonderful to watch leah and her new friend grab at puffins and apples and jelly beans on the table, only to have it strewn across the floor. which then created perfect smashing grounds for the both of them. and it was ok! not just "oh maren, don't worry about it. it's okay" but "oh, that really does happen here more than once a day. it really is ok."
ryan and his new friend sat on the couch and watched the masters like any two sports-loving men should do.

i ran around inside and out chasing two tornado-esque girls and one delicious little brother with my new rett bff. we chatted about all things rett as well as our similarities in books, food, exercising, and lots of other stuff.
it was well worth the hour's drive.

and i'm going back next weekend, alone, to help plan the first-ever northern california strollathon to raise money for the IRSF and katie's clinic, where leah has been seen. if you're interested in donating, click here to view team leah bean's fundraising page.

any donations, small or large, or support/participation in the actual strollathon would greatly tickle my fancy.

{and just for kicks and giggles, here's a flier i had to make for another fundraising opportunity.
i have to admit, i'm proud of the little birdie i created with leah's name as the wing.}


Karen Hauley said...

This is amazing. I would love to be there in October!

ed and kelli said...

this is fantastic mare. i always go to the IRSF page to see if there are strollathons near one of us so that i can participate... now that i know of one..and i won't be well with child then, i am goign flight shopping:) lug you.

Erica said...

wiping a tear from my eye!
necklaces are the next step :)

Molly said...

I am absolutely going to be a part of this strollathon!

Jenny and Brett said...

I have been reading your blog lately and I must tell you- YOU ARE AMAZING! I love reading about how real you are and how great of a mother you are!
It's so nice to meet others who are in the same boat as you! I know when I get together with other adoptive mothers, it's nice to talk about birthmoms, court stuff, infertility, and miracles with other moms who know exactly how I feel! It's nice to know I'm not the only one who feels a certain way about adoption. I'm sure it was the same with you and your new friend! Especially when you feel so different from others around you. But, really, what is "normal?" I don't think it really exists!
Anyway, I've loved reading about your little Leah and your cute family!
much love!

Rebecca Parker said...

if I had money, i would def send it your way! not surprised that you created such cute flier & made new friends...good luck with fundraising! can't believe you've taken on another project though-you go girls (both you & bean!)