One Facebook status later, I had a connection.....and a great one, thanks to my friend Kristin. I emailed Senator Darren Soto and a few days later his office contacted me wanting to help out. I dealt with one of the senator's legislative assistants, Angel. I had a lengthy phone conversation with Angel about ES. He then explained that they would draft a resolution and present it on the next meeting and if it got approved we would have to go to Tallahassee when they presented the bill on the floor. He said it could be a matter of weeks or one year.
In March Angel calls and says "the resolution was approved! Can you come to Tallahassee on April 1st?" Of course!!!
April 1st, the kids and I (and my awesome friend Deana) woke up at 3:45am to drive to Tallahassee (4hr drive) to have the resolution presented on the floor and to Ric! We were all super excited. William and Jonathan were very excited to go to the state's capital and see the inner workings of our government. This is stuff they read in history books. They never thought they would actually get to see it. Ric, on the other hand was more subdued. He was happy we were doing this, but he doesn't like to be reminded of Evans and today was going to be all about Evans.
We get to Tallahassee and go to our senator's office. His staff was super nice and very welcoming. They walked us to the gallery of the senate where we could sit to hear the whole thing go down. Click to see what happened!
From now on, April 1 is Evans Syndrome Awareness day in the state of Florida. All it took was one friend who had a friend who had a friend and a senator kind enough to understand this was important to us. In the words of my son William, I really liked this day!
This day was huge in our household. It is important that our children see that when you want something done you need to do something about it. It may not be easy, but it is worth it. This is how you change your world. Not THE world, but our world. The Evans world. We did not ask to be a part of this world. However, we are. I believe we are here for a reason. My kids have a different perspective on life because of this. Ric has grown ages in two years. So have William and Jona.
Two years have gone by since Ric was diagnosed. Two years ago my world crumbled around me. We have worked hard at building it back up. The support of our friends and family has been instrumental to the rebuilding of our world. It hasn't been easy to deal with Evans, but it hasn't been impossible. Ric continues in good health and we are thankful every single day for it.
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