I have to say upfront, sorry for the lack of posts! The whole point of blogging is to keep everybody in the loop, and if you're like me, you don't keep going back to blogs that never update! I don't really have an excuse, o.k., well other than I was in Washington D.C. lobbying Congress for increased funding for TSC research. For a few days out of the year, I get to trade in my mommy uniform of velour jogging suits and put on a real suit and pretend to be really important. This year's trip was so much fun. The emotions are so contradictory. I'm there only because the love of my life, my sweet baby Avery Elizabeth, has tumors on her brain, her kidneys, her heart, her skin, and who knows where else. I'm there because a stupid @!^%#ing gene has wrecked absolute havoc on our lives, but. . . and there's always a but. It is one of the most amazing, empowering things I've ever done! Instead of getting beat up by this disease, I feel like we're kicking and scratching back. At the very least, we're making sure that our Congressman and Senators are aware that a disease as horrible as TSC even exists. At the same time, I got to hang out with some other "been there done that" mommies that I have come to know and love! Even though the reason we were in D.C. in the first place is very serious, we spent most of our time laughing, goofing, and enjoying a little break from our normal day to day routines. I was the night owl of the group and stayed out way too late every night! One night Amy and I hung out with some other TSC families until three o’clock in the morning!! I haven’t done that in a LoNg time! They have some great pictures of us with the Congressmen that we met with, and I have some great pictures of us celebrating our success with a few beverages, and getting up close to some of the famous sites in D.C., so for now you'll have to settle for the pics of the real VIPs in my life. . . two amazing TSC moms who inspire me to keep on keepin' on! Here I am with Laura, in front of the Supreme Court. I kept saying "I am the Law!" something I used to tell my students all the time -giggles!
If you don't recognize this guy, it's John Roberts the co-anchor of CNN's morning show.
1 comment:
HI! So, it is no secret I am a blog stalker! I was so excited to see your new post this morning! I also just wanted to tell you how proud I am of you for not settling for those so called "answers" those first docs gave you about Miss Avery and her diagnosis and fighting for her.
I know that the journey has been far from "easy." You have experienced more heartache and frustration that one should ever have to. BUT...in the midst of all that "yucky" stuff, you have been given the opportunity to see countless smiles and hear that ORNERY little giggle of Miss Avery's! Can you ever imagine what you did before that giggle came along?!
I love you dearly and am so, so blessed to have you in my life!
Post a Comment