Cyrs

Cyrs

Thursday, March 26, 2015

World Epilepsy Day - Purple Day 2015!

We only learned of Purple Day last year, which I find kind of telling when I realize where we were two and three years ago. 

I think people feel more comfortable spreading awareness and advocating for a disease, event, location, tragedy, etc. after you've gone through it or experienced it first hand, maybe even reaped the benefits of some of the organizations that support people in similar situations. As with Cameron's epilepsy, we really kept to ourselves and to our close family and friends in the first few years of his life, as we stumbled through the journey that is Pediatric Neurology. It was only just before and after his surgery, when we started to see improvements in his seizures, that I felt like we belonged to a bigger community. I think sometimes when you're going through the motions, through the tests, emergencies and appointments that you feel like your experience is your own and no one can relate.  Its only once you have come out of the experience (and maybe you're still in it) that you realize you were never alone. I think that's where the feeling of necessity to spread awareness comes from - wanting to make sure those people who all feel alone right now, know that they aren't and to support those that supported you in the hardest, most alone times. 


Cameron and I dressed in our purple this morning - the little punk wouldn't smile for me. So, what does every good mother do? Bite his ear! Not pictured is Shawn, who did sport his purple today too!



The Cyrs are going through big life changes right now (very exciting ones!), but one constant this winter (besides the snow) has been that Cameron has not had one seizure since October 27th! (knock on wood) I think this is the longest he has gone without a seizure - it'll be 5 months tomorrow (knock on wood again). He's had cold after cold, cough after cough, buggers after buggers, and no seizure. We've had these stints before where he's gone a month, two or three without any seizures. We get comfortable - don't have to even think about his med dosages, forget his Diazapm when we leave the house, don't check expiration dates on other emergency meds, so that when he does have a seizure, it sends a shock wave through our systems. It's easy to forget that he has epilepsy when he's not having seizures. It's not like you can SEE it, ya know? And so, because it IS Purple Day - World Epilepsy Day, I'm going to share my obligatory epilepsy 101 post!


I'm looking forward to getting more involved with my blog and keeping up with the goings on! As I said before, lots of happenings with the Cyrs and I'm looking forward to sharing that!

Thank you to all of you who shared your photos of your Purple Day outfits! Cam was so excited to see them!

"Don't worry 'bout a thing, cause every little thing is gonna be alright"

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