Tuesday, March 27, 2012
Yesterday was Purple Day. Purple is perhaps the color I despise most. I don't know why, but whenever I have tried to wear something purple or to use purple in my home decorating, I feel like I have a constant creepy crawly itch all over, sort of like just realizing you have sat next to a tree full of chiggers.
But still I celebrated Purple Day yesterday.
Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. This year, people in dozens of countries on all continents INCLUDING Antarctica will be participating in Purple Day!
So while I couldn't bring myself to actually wear purple (remember those chiggers), I did celebrate by holding my sweet Ashley just a little tighter and a little longer!
Ashley has had seizures all her life. When I first adopted her, she was having 2-3 a day. When she was just three years old, she had a status seizure and the only thing that kept her alive was life support for three weeks. Her doctors and I have been through many medications trying to get her seizures under control, but have never been completely successful. But things have definitely gotten better.
About the time Ashley hit puberty, her seizures changed a bit. Instead of grand mal type seizures, she changed to complex partial seizures. But the number of seizures went up to 6-8 a day. That was where she stayed for several years as we experimented with different medications, all of which had a lot of undesirable side effects. Also about this time, we discovered that she has three brain tumors. The doctors feel they are benign tumors and that they are not the source of her seizures. So, I have made the decision not to put her through brain surgery at this time.
Then as Ashley emerged from the puberty storm, her seizures changed yet again. While they are still complex partial seizures, they are shorter in duration and fewer and farther between. Now she may only have 2-3 a week. And, she can now tell when one is about to happen and can get herself into a safe position to avoid injury.
So all in all, things are much better. I hope that one day she will have no seizures, but at least things are manageable right now. Seizures will mean she would never be able to get a driver's license - well that and the fact that she is blind - but there is little else that she can't do.
So in honor of Purple Day, I resisted the urge to scratch and donned something purple. Purple Day or not Purple Day, she is one of the most important people in my life and I would do anything for her - even wear purple!