This year is probably our eldest's last year as a Purple Day ambassador at the local elementary school; her sister is moving on (to high school) and so apparently is she, as far as Purple Day is concerned. This year's epilepsy awareness was wonderful--- the kids were mostly dressed in purple, with lots of great questions and good attention to all we did and said. What floors me every time is the children's concern for our eldest daughter and the memories it stirs up for them of other situations: a parent's illness, losing their parent in a store, a cousin's seizure. They are quick to share and asked a lot of very valuable questions: "How many seizures has she had? What triggers a seizure? Why does she have seizures? What was her first seizure like? When was her worst seizure?" Unfortunately I had to say that her worst seizure was probably this week with a long seizure at school with no apparent triggers which resulted in her falling and hitting her head on a table. Fortunately, several hours in emergency, a neck x-ray and blood work revealed that she was fine; just bruised, in pain and sore for many days afterwards.
Despite our best efforts to the contrary it seems as if epilepsy is not done with us. I don't know what the future holds for us all; our daughter has said that if she is still having seizures after her graduation from high school that she would like to have surgery. This is an option that fills me with trepidation but an option nonetheless. Perhaps research into CBD will speed up it's use as an antiepileptic. Or maybe we will find that elusive perfect dose of prescription drugs that will keep our daughter seizure-free. Or perhaps there will be something new. Any way you look at it, it is a tough go and one we would be happy to live without, except we can't, at least right now. Every day that she climbs out of the little yellow bus and and says "Hi Mama!" is a good day. And that's just the way it is....
