We think about epilepsy every day. And yet, it’s good to still have a month to think about it, as a message, rather than as a disease, life-threatening illness, never-ending challenge, burden….. I could keep going.
Here we are 16 months into our journey, and I am trying to be committed to doing more for the cause. Because it’s not just a cause, it’s for Reese. If research was further along and equipment was more in tune with small brains like hers, we might not be sitting here with such little information. The waiting is agonizing. The fact that it’s because we don’t know enough, in today’s technology age, is so hard for the tech geek in me to swallow.
We kicked off November with an adult night out at the North Texas Epilepsy Foundation’s first gala fundraiser. We donned our boots and tried to do our roots right, attending a cowboy chic dancing and casino night at Gillys. Everyone is coming with us next year and we are going to make it a huge party of our own! The most important part to us was connecting with the foundation’s director and getting to see a familiar face from our support group meeting.
As if we needed the daily reminder, but the foundation’s Facebook page reliably keeps posting new facts or awareness messages that I debate whether to share to all my friends or not. Believe it or not, I am pacing my rhetoric. I worry people will tune out and be annoyed. And I really don’t talk about it for sympathy. I look back to 22 months ago — my old self — and it never occurred to that old me you could be so affected by seizures. Not sure I even understood what one was.
Good news is there are tons of examples from others more experienced in this message than we are. It’s really a communicator’s dream to have plenty of content to work with. Which is why I’ve treated this like any other communications plan I would build, and I’m plotting when to post what and space out what we are going to do, to make it interesting, and informative for you.
This weekend, we turned up the dial and it was all about epilepsy. We were surrounded with support after we took a big leap and asked our soccer team to wear purple ribbons during the game. We have a few good pictures to remember the moment. Bryan is my hero after this weekend. I hadn’t prepared well enough and was going to put the ribbons together Saturday morning before the game. But then late Friday I learned from our Neurologist’s office they had a seminar at the hospital on surgery options. Seeing I could be in two places at once, Bryan and Davis made the trip to JoAnn’s, got the ribbon and did all the cutting, gluing and pinning to create these beauties. Like I said, my hero.
Reese and I headed downtown for our seminar and she got to be snuggled on by volunteer baby-sitters, and her usual fans from the Neurology department. Yes, they work on Saturdays sometimes. They are amazing. We were cutting it close to get back in time for Davis’s game, with the 45-minute drive, but we got there for the second half. The guest of honor snoozed in the car, but woke up just in time for post-game pictures. More to come.
Highlights from the seminar to come separately.