Monday, October 31, 2011

halloween take 5

dear little leah rapunzel,
i dare say you and your long, blonde locks stole the show this year. we {you} chose your costume clear back in july and it was still what you wanted by halloween! thanks for sticking to your guns. i had a great time being the parent helper in your classroom today. thanks for letting me come. 

dad says thanks for letting him go trick or treating with you. i know he enjoyed it, but i'm beginning to think he might have had some ulterior motives - or do you really like dots that much? just curious. 

i love you miss ribbons rapunzel. to the moon and back. 
love, 
mommy



Friday, October 21, 2011

blue sky girl...

dear little leah, 

lots to catch up on, i know. i have some stories about school, backbacks, new york city and...seizures. yup. lots of them. 

for now, just wanted to leave you with a quick update about one super cool thing we participated in for rett syndrome awareness month: blue sky girls. it's a new event, and one that was occuring all at locations around the world at the very same time. for us, it was in boston on the steps of the harvard medical  building. rather than focusing on what you can't do and some of the awful and horrific things rett syndrome has done to your life, this event focused on the good. your strength. your perseverance. your hard work. your stamina. and your giggles. 

one by one, about thirty rett girls {and one rett boy!} walked - or were carried - up the stairs with their families by their side. daddy and i each took one of your sweet little hands and together we all climbed all those stairs. you didn't need our help to carry you one bit. and you giggled the entire time. you made lots of other people giggle because you were laughing so much. i kind of liked it.

it was so great to be surrounded by so many other families who have also been striving to show the world what you amazing girls {and boy!} can do. 

plus, everyone was wearing PURPLE {your fav}, you got a PURPLE balloon and a PURPLE flower and we even painted your toenails PURPLE. does it get better than that!? 

it does. 

after we climbed, we walked over to children's hospital boston for a lunch and we got to meet lots of the new doctors and others you will be working with for the next few years.

it was a good day, miss ribbons. a very good day. thanks for working so hard. and thanks for making us laugh. 

i love you, little leah. 
love, 
mommy

Saturday, October 1, 2011

awareness

dear little leah,
well, it's october again. our third now being aware of rett syndrome. strangely enough, the month we first became aware of rett syndrome is actually rett syndrome awareness month! we have a few things planned for a little later in the month {which may or may not include painting our toenails purple}, but for now, enjoy this little commercial from clint black. what a guy.


i love you, little leah. 
love, 
mommy