Wednesday, September 9, 2015

Who is she?

Every experience we have throughout our life helps to mold us into the person that we are.  Each personal encounter, each school we attend, the way people treat us, the way we are loved, all of these contribute to our wholeness.  As an infant or toddler we are more mailable.  What happens during these early times impact us in such drastic ways whether negative or positive.  The younger we are, the easier it is for us to bounce back from a more tragic or difficult situation, but on the other hand, the more impressionable we are to or exposures.  It is during our earliest years of  life that we are most vulnerable.  

A constant shadow hangs over my head when it comes to Sonya's medical treatments.  I am constantly left thinking who will she be if we did or did not do x, y, and/or z.  If one of the side effects of keppra weren't irritability, would she be a baby with a constant toothless grin?!  If it weren't for topamax would she be a bit quicker cognitively?!  How much of the Sonzee bear that we know and love is actually Sonya?!  How much of her are we missing out on?!

Gosh I HATE this.

I really don't have any negative feelings towards G-d, I don't hold anyone responsible, because I don't feel there is anything or anyone to blame, but I am just so utterly upset at this situation.  I simply detest the fact that we are even in a situation that we have to balance side effects of drugs vs seizures that could cause brain damage.  It is so difficult to differentiate when she is grouchy because of an impending seizure, because of her medication, or simply because she is an almost 7 month old baby.    I cannot express how upsetting it is when I think about the fact that I don't really know my own daughter.

I often wonder who she would be without these drugs, but then the idea of her seizing 1 minute longer or 1 more additional time during the day due to my selfish desire smacks me back into reality.