Today is Global Day of Epilepsy Awareness alias Purple Day.
I do not have epilepsy, but I can honestly say it has changed my life. Six years ago in 2009 I thought we would all go out to dinner to celebrate another household birthday. I was full of anticipation, ah a night I didn’t have to cook, all’s well in my world. Instead my youngest child ended up in the Pediatric Intensive Care Unit with status epilepticus, in other words one long endless seizure from viral meningitis which blossomed into encephalitis ( brain swelling) three days later. The doctors were cautious, they were not convinced my son would survive, I had no doubt that he would but had no idea the road we were now on. Epilepsy has been a constant companion ever since. 30% of people with epilepsy cannot be controlled by medications alone; in fact there is no known CURE at this time that works for all people as there are so many variations of this disease.
For the past six years we have looked for a cure, tried various combinations of drugs available, brain surgery, alternative methods, you name it we’ve looked into it. We have put vast amounts of energy into the search instead of living an altered life, I was so sure there was an answer and there is, but not the one I was prepared for.
This past December for a second time I almost lost my son due to complications of his epilepsy. I realized once the crucial aspects of his physical trauma had abated that it was time to change our lives. It was time to live with the epilepsy instead of fight against it, it does not define him as a person but most certainly colors his world, but it isn’t the only color of his world, there is an entire palette for him to choose from, perhaps not exactly as we had imagined but it exists.
So today I wear purple, because epilepsy is a part of our world, but only a part of the rainbow.