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
