Broken

It's been a really long week and a half.  I feel like my entire world has just crumbled in my hands.  My last post was so upbeat and full of excitement and yet just hours after posting it, we have been dashed against the rocks and set adrift.  I don't even know what to write......

Ayla's condition is known as Polymicrogyria and her 'version' of it is called Bilateral Frontal Polymicrogyria.  We have always known that seizures were a part of the symptom picture for around 80 - 90% of people who have this condition.....but she's 6 years old and never had a seizure.  We thought we were home free.  At least we hoped like crazy that she was.  And now all of that hope is gone.   So far she's had nine and despite having to go on Epilepsy medication they don't seem to be letting up yet.  Every damn night I watch my baby girl's brain rack her little body with spasms and turn her beautiful innocent giggle into something that is sinister and dirty somehow.

At the risk of sounding like a spoilt child......It's not fucking fair!  She already has so many struggles ahead of her.  It's not fair that she's forced to face this too.  She looks so frightened.  We're all frightened.  I feel like I'm either going to lose my beautiful happy girl to constant seizures or I'm going to lose her to strong medications that bomb her out and take away her laughter.

I know everyone says I'm strong but I don't want to be strong.  I want to scream and shout and yell and cry and tell the universe that it's not playing fair.  I want to swear and punch something.  I'm so over watching her constantly struggling.  I'm tired and I'm burnt out......and I'm broken.