Purple People Power

We had a great weekend.The Purple Meet and Greet was fantastic! We actually stayed much longer than anticipated. There was a little break in our chaos and we had a wonderful time...in between trying to chase Cole around and convince him that he could not play the piano, yell loudly or speak into the microphone.Life is an adventure with him. Lucky for us, no one rolled their eyes or stared daggers at the people whose child was going up and down the aisle while very important speakers, including the president of the Epilepsy Society of America, were speaking.
I got to see my friend Jennifer, from Living For GraceHobo, Melorah's service dog was nice enough to let Cole practice with him for a few minutes. We love the opportunity to expose Cole to service dogs in preparation for his new dog in October. With all of the craziness of moving, I have not written yet about Starburst, our friend Ben's dog, who came to visit us before we moved. Cole warmed up to Hobo eventually and took a few passes up and down the hall, doing really well with holding the short leash and staying by his side!Cole even got to hang out with our local girl Hayley, (if you can call almost 3 hours away local) from Hayley is My HeroHer mom graciously let Cole play with her camera for a half hour or so. I am sure there are some interesting pictures on her memory card now ;)

We are so grateful to be involved with groups like the IDEA League. Also, on the same night a wonderful gala, Ciara's Butterfly Bash, was being held in Connecticut by the Dravet Syndrome Foundation. Hopefully they raised lots of money to help with research for Dravet Syndrome. We are lucky to have two great support groups for something so rare. These people have really become like family. We greet each other with hugs, even if we have only met in person once before and probably won't see each other for another year or more. It just makes it that more special to get to spend time with them. We're glad that the 3 to 4 inches of snow predicted for the walk yesterday, just turned into a little skiff. Hopefully, they all raised awareness for epilepsy and helped a few people understand that is affects more people than Multiple Sclerosis, Muscular Dystrophy, Cerebral Palsy and Parkinson's Disease combined, but has little funding. Plus, there are rare forms, like Dravet Syndrome, that have very little research available, which makes it even harder to treat. It is great to go to these functions where you see other kids with Dravet, but it is also hard when you recognize that not a single older child there was independent or high functioning. This is the best time of Cole's life right now. It prepares us for the future, but also helps to put things into perspective.Thank you to all of those who participated in Purple Day and the National Walk for Epilepsy. We really enjoyed getting to see some of you here, in our new home town, and missed those who could not make it. Especially those of you that are in the hospital right now, HUGS! Together, we can find a cure.

*Don't you just love our 70's Love Lounge fake paneling?*