Friday, December 3, 2010
"The question is this: Is man an ape or an angel? I am on the side of the angels." ~Benjamin Disraeli
Most of you that find your way here from time to time,were not around during this blogs inception.During the horrific Infantile Spasms days.Days that made fighting leukemia look like a walk in the park.Okay, not actually a walk in the park but seriously,some find this unbelievable but I have said this time and again, our Infantile Spasms days, seemed in many ways, far harder than the cancer days.Leukemia treatment was straight forward.This is the protocol.This is the treatment.Epilepsy is far from straight forward.
Although much of our lives over the past almost 4 years seems as if we have existed in a dream state,or nightmare state,depending on vantage point,it was those days, watching my little love literally disappear from us,her smile stolen away by a silent thief,that seem most surreal.I keep those days close to me for one reason and one reason alone.To remind myself, on days I have become too complacent or too whiny,to acknowledge the beauty that exists today versus the ugliness that was sucking the life out of us,out of our daughter,then.And,every once in a while a reminder comes in another form.Usually one encased in a precious,innocent baby.
Today it was a 6 month old little guy.A weird,what are the chances that would happen,little guy.A connection that appears to be pure coincidence but perhaps instead is God once again being anonymous.An opportunity to dig deep, dredge up those dark days,days in which I once yearned and pleaded to find purpose.Today I found myself proclaiming,ah-ha,here,here perhaps is a sliver of purpose.
With Infantile Spasms,one cannot give that beast,the upper hand.You need to jump on things and jump on things,like,yesterday.When we were entrenched in it all,in the beginning stages, we had no idea what we were up against.We were schooled rather quickly and rather relentlessly and today,when I heard "probable Infantile Spasms",I did not miss a beat.I refused to have any family wait more than a day,heck,more than half a day, before their child got to where they needed to go and in my opinion,that was UCLA.Now,why am I telling you this?Well,I am certainly not trying to toot my own horn but rather,in a day and age where we have become so jaded and bitter towards the health care system and anyone connected with it,I need to tell you of the good.The inherent good that still exists.
Zoey's doctor,Dr.Shields,email was not working.Being the impatient person i can be sometimes,I decided to not wait for a secretary to maybe,and more than likely not,call me back,so instead I went to the top.As in the top of the food chain,Chief of pediatric neurology at UCLA.I penned off an email and do you know,in less than a half hour he had emailed me back,with the most incredible, caring words and set in motion events that will ensure this little guy will have a fighting chance against this catastrophic form of epilepsy.This doctor was actually away at the Annual meeting of the Epilepsy Society.He is one busy guy,to say the least, and he stopped.Stopped what he was doing.Because he cared.Simply unheard of these days.
I learned two things today.One,never underestimate the power within.If you don't try,you'll never know.Two,there are doctors and staff out there,who actually are still in this rat race, to do good and and make a difference.My faith is once again restored and tonight,I go to bed knowing that one little boy and his family,have hope on their side.