The Shaky Dance

Finding a spot to begin, that is always the hardest part for me.  This time though, it seems as if any beginning is futile.  I wonder where van Gogh's brush first crossed the canvas of "Starry Night".  Was there a deliberate first star, or had he only imagined a church steeple in the night sky; making that his first stroke? Would it have mattered if he started elsewhere?  Could the entire painting have been rearranged by the simplest flick of the wrist? 

A missed step, a bruised cheek, the culprits of the next days scare?  CT scan said no.  That was after my surreal drive to the Children's Hospital with my just seized daughter in the back of my car.  Not really giggling but not quite fearful either, she keeps saying, "Mama I shake-ah like dis".  She reminds me of Jell-o.  Starting at the bottom and resonating up; she wiggles.  If a child is having Absence seizures they remain unaware, picking back up where they left off before the episode began.  Had I been able to break through my fear I would have heard my child telling me that these were not Absence seizures, but something else entirely.  A few days later and somewhere around 60 seizures later we land back in the ER.  Jacksonian seizures; a diagnosis, though not confirmed, is thrown around.  

A stat EEG is ordered, followed by an MRI.  Mama duties have been upped a notch.  Show no fear, I whisper to myself.  Smile, make funny faces with electrodes coming out of my nose, whatever it takes to prove that this is not awful, nor sickening, and that this is most certainly not happening to my precious baby girl.  Oh but it is.  Now, the fall and the bruised cheek have become evidence of her first seizure activity.  Today it was a bloodied nose, on top and all around, it was the fat lip and the skinned knee that show evidence of abnormal electrical brain activity.  Well yes her right leg does have a  tendency to go numb either right before, during or after having had a seizure.  I just can't quite pinpoint it on the timeline.  But I can absolutely pinpoint my broken heart.  It beats deeply in my chest for my first born daughter; my courageous, beautiful, feisty girl. 

I was adjusting to the likely Epilepsy diagnosis with a sense of peace.  But these injuries, I don't know what to do.  They illicit a fear in me that I hadn't felt except in those initial seconds of first witnessing my daughter's seizure.  Up to Denver to see the Pediatric Neurologist on Wednesday,  I am keeping my fingers crossed that we get an instruction manual. 

There is a certain levity though that must be observed when going through something this big with a child so little.  I thank my God for this.  She has dubbed her seizures "The Shaky Dance" and for emphasis there is a little heiney wiggle at the end.  I can't help but smile.  Such grace that child walks with, such Grace.