Tuesday, October 8, 2013

Simple shades of things...and the complexity of it all.

Meara's been having quite a few seizures during awake hours now.  We might have shared that, can't remember honestly.  She is aware when they are coming and will typically bury her head into Megan's chest when she's having one.  She's having them in the car, in her chair at dinner time, and playing with Ainsley down in the family room.  

She's also been having so many during her sleep lately that she's been coming into our bedroom around 12:30am or so to sleep with us.  This has been going on for about a month or month and a half now…hard to keep track after awhile.  She's had five since I put her to sleep tonight which was an hour ago.

After Meara had one in the car with Megan last week she told her that she really wants to go the hospital to have her seizures taken away.  So, if that isn't affirmation that we are making the right decision for her…when then…not sure what is.

So, we are tired.  Been a busy cycle with her lately.  Seems like the seizures are taking over a bit.  We are almost a month away from her resection and it seems as though everything is telling us that we need to do this surgery. 

She's still got a lifetime ahead of her.  She's beautiful.  And challenging.  And lovely.  She draws every morning before school.  She's riding her bike without training wheels like a bat out of hell.  Our neighbor Matt always remarks how she rides her bike without any restraint.  Like she's got nothing to be afraid of.  Normally I'd be worried about the lack of restraint but then...

That's what I imagine for her…that she has nothing to be afraid of.  She's so energetic…and complex…and yet so simply…amazing at living in the moment.  I hope that her wonder, discovery, and difficulty in life is something that she'll hold onto.  That she'll live in a world full of imagination and magical territory.  I hope that she'll always dream and keep her sense of surprise and novelty close to her. I hope that her journey through epilepsy will be something that she doesn't see as a stigma but rather something that has given her a wisdom and understanding that will bring her shining stars against a dark night sky.  It might take her a lifetime to unpack…but she'll be stronger.  That is what I believe.

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