Sweet Josie

Our sweet Josie resurfaced yesterday for a whole day of seizure freedom.  Not one seizure for the entire day.  It was wonderful but made this morning so bitter.  As always, Jake brought her into bed with us so we could all start the day together.  Usually this is when we notice the first of what turns into many seizures.  But this morning, she didn't have any.  I felt like I was holding my breath.  Could we really have two days in a row? Could this be the end of it?  How can I even allow myself to hope for that?  Sadly, while she was eating her breakfast she had 4 full drops.  I couldn't even look Jake in the face for fear I would burst into tears.

Yesterday was a gift and a reminder of how different Josie's behavior is when she's not tormented with constant seizures.  We often struggle with the question of what is just 2 year old behavior/developmental/motor skills stuff and what is being caused by the craziness in her brain.  We got to deal with several temper tantrums yesterday and screaming because Sophie wouldn't share.  Then today, we could see her winding up, compulsively touching things over and over, faster and faster until it would end in a staring spell followed by a drop.  More drooling, less ability to sit still, difficulty formulating words after her seizures.  

I am so frustrated by my impatience and inability to fix it.  Often times I want to just put my lips to her forehead and suck it out of there.  I think I've resisted posting here because if I actually look at it from a higher level, one other than the immediate care and safety of Josie, it becomes too much.  I want to cry and scream.  I feel like this doesn't fit into the rules of any problem that I've seen before.  I can't chart her progress.  There is no progress.  It's a long term battle that I can't keep myself from wishing everyday that it was over.