Low

   

     A tiny seizure, this one at home, safe on the couch, surrounded by family, over and done as quickly as can be....It's just another seizure. I guess though our daughter and I had high hopes for the latest anti-epileptic medication. So it was the first seizure in 24 days but it was also the first seizure of the new year, the first seizure on the full dose of the new medication and so we are disappointed--- so disappointed. Add to that the death of Grandma, the hospitalization of Nanny, the cold, the gray and illness and I felt brought as low as low could go....black and with no place to take it. God and I weren't talking.  I know, I know! Count my fingers and toes, my blessings--- I have a roof, I have food, what can I possibly complain about? Nothing, except some days contentment does not come easily. Intellectually I know that I should want what I have instead of having what I want but I don't want money or fame or even a new car. I want our daughter to be seizure free. I want her to be safe. I don't want her unconscious, even momentarily, anywhere but especially out there somewhere. I fear for her out there, vulnerable, unsafe, alone, unknown. I fear for her. And so it goes: we start over and count and pray and live our lives, day by day and so it goes.....

Purple

 

     Our eldest daughter has always loved the colour purple: purple clothes, purple stones (which are amethyst and not her birthstone), purple shoes (like Justin Bieber used to wear) even purple sheets. So it worked our perfectly when it turned out that the internationally recognized day for epilepsy awareness was Purple Day. Whenever our daughter has done her Purple Day talk at the local elementary schools talking about her life with epilepsy, she explains that " Purple Day is purple because the lavender flower is purple. Lavender is associated with feeling alone. Many people with epilepsy feel alone. It is hard when you feel like you are different from everybody else." Scrolling down any of the epilepsy Facebook pages you become aware of how true that is. Feeling different is a terrible burden, particularly when you are a young person. And epilepsy does not usually help you make friends, as our daughter can attest. Seizures are dangerous, scary, isolating and in many cases, uncontrollable. As our daughter continues with this new medication we say a silent prayer that this will be The One. This is no doubt a prayer that many parents utter. We were sad to note that Cassidy Megan, the seventeen year old girl who started Purple Day, had been struggling with seizures and had spent much of the holidays recovering. Recently our daughter had a seizure at a Vancouver Canuck's game which demonstrated to her that sometimes people can be very nice to someone with epilepsy however as we all know, that is not always the case. Anyway my "New Year, New You" resolution is to worry less and be more positive, something our wise, wonderful and eternally optimistic daughter does already every day.