i am humbled at the support from this post about my life with cystinosis. it was a gut wrenching post to write and even more difficult to hit publish. although i do it often, it is not easy to put your heart out there for everyone to see. but i believe with honesty comes awareness, with awareness comes more fundraising, and more fundraising brings more research. we have raised $1,135 so far in honor of Sookie turning two on wednesday. you all have me crying tears of joy. so thank you. a million thank yous. keep sharing the causes page and the blog post. together we are moving mountains for this small community, it is not a lie that every little bit helps. there WILL be fierce change coming about.
books that carry a strong and universal message always get me square in the heart and gut. wednesday was the first day in a week that i didn't have to be at the hospital or the doctor. we (roar, sook, and my momma, my dad had to go out of town on business) participated in the emerging adulthood cystinosis project and it was a good day afternoon of talking about the big stuff, chit chatting about the little things, and laughing at anything and everything in between. my friend maya (who is a fabulous social worker in new york and who is conducting the study) gifted this simple, yet remarkable book to little miss sookie.
pete is a cool cat who is so in love with his white shoes that he struts around singing about how much he loves them. then, through a series of mishaps, his shoes change colors. does pete get upset? no. heavens no. he picks himself up, dusts the dirt off his shoulders, and not only embraces his newest color of shoes, but learns to love them.
simple words, big concept. love your white shoes, if they happen to turn red one day, love them too. love them when they are green, purple, yellow. and if you happen to find yourself without any shoes someday? thank God, the universe, the stars and the oceans that you ever had the experience. live out each moment you are blessed to have with each color along the way. the beauty of the journey is the adventure each different color of the rainbow holds for you.
(corny? yes.) oh well.
that's how we roll around here. ;)