Tuesday, November 3, 2009
Embarrassed to say it ...
November is Epilepsy Awareness Month and .. I didn't even know it.Why is that?Seizures were such a huge and devastating part of our life at one time.Actually,Zoey's life.It was,after all, her little brain that was being jostled relentlessly.We all however, lived and breathed Zoey's seizures.Or rather we mostly held our breath.Our lives were consumed with counting seizures and watching for seizures.The little guys even would yell out,"seizure",when she was having a cluster.How sad is that?Our lives were once dictated by guessing,"Do we go up on dosage?Do we go down on dosage?Is the dosage EVEN working?Was that one or wasn't that one?"We,or rather Zoey was a veteran at EEG's.Too many to count.Sleep ones.Waking ones.Over night ones.Video ones.You name it,she had it and she was not even one.We were regulars in yet another area of CHLA.We knew peoples names and everybody knew Zoey.Not the attention we were really seeking.And you think that the 4th floor cancer floor is sad,you should spend the day in a neurology clinic.Devastating.Truly devastating.I shared with someone awhile back,that Zoey's seizure time was a truly dark,dark time.In many ways darker then the leukemia days.At least cancer has some set in stone protocols for cure in place.Not true for Epilepsy.It is often a crap shoot.The doctors are guessing just as much as we are and nothing is more discouraging as to see your neurologist face looking defeated because he is not particularly optimistic on the next medication choice.Seizures came out of the clear blue for Zoey.One day a subtle head drop and the next week an
EEG report that read like a really, really bad horror movie script.Zoey's type of seizure disorder,Infantile Spasms,is referred to as a catastrophic form of Epilepsy.Not what parents wants to hear.It is often very difficult to bring under control and most often leaves in it's wake, severe developmental delays.Well,Down syndrome already held that for Zoey,so to have another zinger thrown in there,seemed a bit unfair.We watched our once smiley little girl,leave us.Leave us like,no body was home,leave us.No smiles.No expressions what so ever.She stopped rolling.She stopped eating well.She just STOPPED.Our journey from and through Infantile Spasms was relatively brief,compared to some, but it was still dark and agonizing.In the end,after 2 frontline medication failures,Zoey found her miracle in a drug that little held hope would work.That was a gift.If you were to head back into my archives from March 2007 - June 2007,there is ,some UGLY stuff.In fact this blog began after Zoey was diagnosed in early February 2008 as place for me to sort out and vent my demons.What it morphed into was what you see today.A place of hope.For possibly,some frantic mother,googling Down syndrome/Infantile Spasms and up pops hope.Because that is what happened to me one sad February evening and what I found,was hope in the amazing Sam.To this day I go to his site and I see Zoey's future.I see in Sam,Slow and Steady Wins the Race,Everything is possible... the impossible just takes a little longer.I see a little boy who is laughing and living and that was the gift and by product,for me, of Epilepsy..Along the way I have "met" the most amazing children and families.There is a core group of us that still stay in contact, over a year and a half later.Of the group,Zoey has found seizure freedom for over a year now,little Hannah,who is Zoey's age,from Georgia,who doesn't have a blog but rather a caringbridge site,is seizure free and has just begun walking,.Dawson was blessed with seizure freedom for almost a year and now is back in the battle and then there is Jude and my little love Reagan, who have battled and battled and battled on their quest to find their miracle cure.There are other loves that I follow as well,Sophie,Bennett,Kendall,Madie,Maddie,and Jackson,who are all on various junctures on their Epilepsy journey's.Lets not forget either, our buddy Jax .On top of his heavy load he also battles daily with seizures.I feel helpless but not hopeless for all of them.They inspire me.Each and everyone of them.So,it's November.Epilepsy Awareness month.Go here or here.Learn more about Epilepsy.The stigma attached and the true lack of funding out there to get these kids to seizure freedom.I say that I don't take Zoey's seizure freedom for granted but do I?Have I become too comfortable and confident that she remains seizure free on a very low dose of medication?Lord I hope not.Zoey has an amazing doctor at UCLA.One,that rumor has it, is retiring.One that has been a source of encouragement and has rejoiced alongside us in Zoey's progress.Zoey has a wild card of a hemispherectomy if her seizure were to return.That is a gift as well.Many children lack options.Many parent have become disillusioned and disappointed with the medical field and often are left wondering,"Does anyone care about my child?"Well I do.And to all my Infantile Spasms families,I'm sorry that I forgot Epilepsy Awareness Month.No excuse.
As I wrote to my friend today,Miss Zoey is 3 for 3 ... September...Childhood Cancer Awareness.October ... Down syndrome Awareness and now November .. Epilepsy Awareness.Zoey sure likes to make sure she is part of the crowd.I really need to tell this girl to be more of a leader rather then a follower!!