60 Days and Counting to Epilepsy Surgery

I'll do an introduction to Awesome's situation in another later post or on a blog page.  Today, I just want to start this diary.

Today was a quiet Sunday at home, for the most part.  With her birthday week and all its excitement and things to look forward to, behind her, Awesome is starting to struggle as she contemplates what is ahead.  Her epilepsy surgery is scheduled for 60 days from now--on January 9, 2020.

There were several firsts this weekend, in regard to contemplating and reacting to what is ahead.  On Saturday afternoon, out of the blue, Awesome came to me sobbing uncontrollably, as if her heart were broken.  When I asked her what she was crying about, she indicated that she felt totally overwhelmed thinking about her situation and the upcoming surgery.  She sat beside me on the couch and pressed her body into mine, and with my arms around her shoulders, she cried and cried, until my arms were wet with her tears.  There weren't a lot of words with her crying.  My queries to her about what she was crying about, were minimally answered.  No, there was nothing that precipitated her crying.  Nothing going on online.  Nothing that happened.  She was just suddenly overwhelmed by her situation.  After she finished sobbing, she lay with her head on my lap for awhile and then got up and went back to her recliner on the other side of the room.  She didn't want anything to eat or drink.  And no, there was nothing I could get her.

It kills me to look in her eyes these days.  They are the eyes of a child who is worried.  They are a window to her soul and where she's at.  They are the eyes of a child in pain.  Not physical pain.  But pain borne of uncertainty about her future. 

That future uncertainty was on her mind tonight at bedtime.  She was unusually quiet and as soon as she was ready for bed, sought me out intensely and earnestly.  And so, I put my laptop away, and gave her my full attention.  And she talked.  Up to this weekend, it's been unusual for Awesome to talk directly about her surgery except in small impenetrable sound bites that she has--to now--resolutely refused to unpack for me.  But tonight, she wanted and needed to talk.  And was all about explaining what she meant by what she said. 

First we talked about her upcoming neuropsychological testing.  And about how she didn't want to do it.  Because it made her feel dumb.  I assured her she was anything but dumb.  And through the conversation I came to understand that she didn't understand what the testing was for.  And who usually has to undergo neuropsychological testing.  She thought that every child of her age did this testing to figure out how smart or dumb they were.  She was actually relieved to learn that only a small number of kids do neuropsych testing, and that her testing was because she has epilepsy and because the testing will potentially help with her surgery.  The more I told her, the better she felt about it.

And as we talked eventually the conversation worked around to her wondering what it might feel like if her surgery is successful and her brain is no longer constantly seizing.    We speculated for awhile about that.  And about the fact that doctors say she'll be smarter, have more energy, and just feel better psychologically when her brain is no longer devoting all its energy to compensating for constant seizures.

And then I told her that her brain was a superhero.  That her brain was much better than most at functioning well despite all her seizures.  And how unusual that was.  And how she should appreciate just how extraordinary her brain was in this regard.  And that's what her doctors have told her too.  I wanted to emphasize the positive and put a different spin on how she looks at it all, because, in the last 3 years, epilepsy--and in the last 2 years, the epilepsy pre-surgery process--has slowly chipped away at Awesome's self-confidence, her optimism, and her mental health.  I want her to know that she has fought bravely and has ceded very little to epilepsy considering the ferocity with which epilepsy has attacked her.  I want her to have that sense of accomplishment.  And that sense of being a badass fighter.  It is her spirit anyway.  And I want her to realize that she's held her territory against epilepsy in an extraordinarily successful way.  And to feel that sense of pride.

And finally with my arm round her shoulders and her head in the crook of my arm, she and I talked about all the ways that the pre-surgery process sucks.  And about how the worst tests were the MRI's.  And about how the way that the disembodied voices on the MRI intercom determine everything about how you feel about it all.  More about that another time.