Yesterday I attended my first We Day with Caitie and Dan in Toronto. This was Caitie’s 4th We Day and Dan’s 3rd so I’d heard about how amazing this event was for years. And it absolutely was just as inspiring as everyone had told me it would be. But yesterday was amazing for another reason: yesterday marked Caitie’s 8th week of no seizures and that is a pretty big deal!
Someone asked me when we stop counting? When does having no seizures just translate to a normal day? I don’t know. This is the longest seizure free streak Caitie’s had since she turned 10. And right now she is not taking any anti-seizure meds and she came off the Keto diet almost 2 months ago. So we are doing pretty good. No, we are doing AMAZING!
But when do we stop living with that worry that a seizure might come. As awesome as yesterday was, there were little reminders of Caitie’s epilepsy sprinkled throughout the event. I did have to tell one of the We Day producers at rehearsal that Caitie has seizures (although she is not photosensitive). I did worry when she barely slept the night before (due to excitement and a bad cold) that she would overtired on stage. Even she worried a little bit that she might have a seizure in front of 20,000 in the audience (her worst nightmare). Lightening the mood, Danny pointed out that it would be a good lesson in seizure safety if she did. And when I had to find her a seat and ask the hosts at the after party for a glass of water when we arrived because she was feeling off, we watched her closely to make sure she wasn’t going to have a seizure. After only 8 weeks, the memory of seizures is too close to ignore any of those things.
Last weekend after the kids presented at the Canadian Student Leadership Conference, Caitie burst into tears on the ride home. Worried I asked her what was wrong. She said, “I’m just so happy, Mum. Everything is so perfect right now.” Then she paused and took a deep breath before adding, “And I’m scared it will go back to how it was last year.”
And last year was bad. It truly amazes me what Caitie and Dan have done in the last 15 months given the rollercoaster ride we’ve been on with Caitie’s health. In the last year and a half she’s had 65 seizures (that we know of). And Caitie would say that’s not so much compared to some people. But trust me, it’s enough. I think their work with the Epilepsy Awareness Squad has really made all the ups and downs of this disorder a lot easier to handle. Taking the focus off oneself and shining it outward can make even the most miserable moments a bit brighter.
I hope that one day we will get to the place where we don’t need to count the number of days Caitie has been seizure free. But right now, I’m grateful for every one of those days that we do have. And for the positive attitude that makes the EA Squad so empowering!