Saturday, January 9, 2010

a great big thank you...

dear little leah,

today i cried.

it was mostly a good cry. a thankful cry. but there was a bit of sadness in there too.

you were in your room taking a peaceful nap. your daddy was in the city at a meeting. i had an hour to myself. i could have done anything in the world {as long as i could do it at home}. and i decided to watch a little video about rett syndrome. we purchased the video the week we learned of your diagnosis back in october. daddy already watched it, but i hadn't. i know i've had time to watch it before now, but part of me was scared. i didn't know what it was going to tell me about rett syndrome. i wasn't sure if i was ready to see all that your life {and mine} could possibly become.

i shouldn't have been scared.

it was a beautiful movie. so many beautiful little girls just like you. so many parents and grandparents that really know what we have gone through as we watched you grow, learn and develop, and then stop, digress and wonder what in the world just happened to our little girl.

i'm so grateful for all the families who experienced rett syndrome without ever knowing what it was and for those families who have such positive attitudes about this trial in their lives. i'm so grateful for all the scientists and doctors who have spent hours, weeks, months, years of their lives dedicated to figuring out what this monster is, who discovered the mecp2 gene, and who continue to try to understand how it works. i'm so grateful for all the families and individuals who have helped to fund this research. i'm so grateful for all the sweet little angels, just like you, who have so bravely endured when their abilities somehow disappear overnight. i'm so grateful for technology that helps me to learn more about what you are going through...and hopefully how to better help you. i'm so grateful for the future and all that it holds in regards to curing and preventing this disease.

mostly, i'm so grateful for you.

i really love you, you know.


1 comment:

  1. Such a beautiful, touching post! Hugs to you!