Tonight at dinner the kids were talking about their lives and Aria said, "I'm pretty happy with my life and there is very little I could change to make it better, very little!"
Then Evan said, "Me too. If I could change one thing to make my life better..." I'm thinking he'll say Pokemon cards, DS games, iPod, etc. and then he looks at me and says, "and maybe you can help with this mom. The one thing that would make my life better is no more seizures."
That one little sentence shows the irony of the lives we are living. Evan trusts us and believes in us and our ability to fix the problems in his life and yet if this is his one wish, we let him down every time.
When he was little I used to think it would be easier when he'd be able to talk about his seizures and what it's like to live with epilepsy but I was wrong. Being more informed is better in many ways, but never easier.