This morning Evan had a seizure and I was on my own because Rob is at the American Academy of Neurology conference. It was not really that big of a deal that I was alone because we've done this so many times, but I know Rob felt guilty for being away. He shouldn't because there is nothing that he could have done to change the events if he were here, but I guess that's just part of being a parent -- a really good parent.
I talked to Rob after the seizure had stopped and Evan was sleeping peacefully. Later I thought about how odd our conversation had been. The seizure "only" lasted about 5 min and I gave "just" one dose of rescue meds to stop the seizure. It has been 17 days since his last seizure and we commented on how great that was too. None of this is good, in fact, it's pretty bad. Yes, it's an improvement and we're happy to see that but this is not a good situation.
I hate the feeling of chasing after the illusive ideal of seizure freedom. I hate epilepsy and all the challenges and restrictions it brings to my family. I am fearful of what it will do to Evan if we can't get in front of the seizures and the effects it will have on Aria as she watches from the sidelines.
I got Aria off to school and then waited quietly for Evan to wake up. When he did he was feeling great. He was in a cheerful, talkative mood and went to school at 10:00. When I dropped him off he was chatting dramatically with the school secretary as she escorted him to class. He told me when he shows up late to school after having a seizure everyone is happy to see him and shouts, "Evan's Here!"
3 comments:
My dear,
I feel for you and know exactly how you place yourself in a helpless limbo. My daughter only has occasional seizures, she has been one of the lucky few up until now. My husband and I, go into a frenzy not knowing what to do, desperately trying for the seizure to wear off. Oh, how I wish our children wouldn't have convulsions at all.
Take care,
Milay
Mum to Natasha 29 with Tuberous Scleroris.
So Lisa, here is what I think --what Evan remembers about yesterday is the cool love factor he got entering the room and Aria remembers all but hopefully lands on the "it was cool to wait at the bus myself' factor...I hate the fear you live with but you are playing it beaitifully my friend.
We talked about the strangeness of our "celebration" of those crazy details. I missed the enthusiastic welcome Evan receives when he arrives.
Again, I remind you that you and Rob are both fabulous parents. I am constantly amazed at how "normal" a life both of your kids have in the face of this significant challenge. It's a tribute to your parenting.
Love to all of you!
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