Tuesday, March 27, 2018


Yesterday was Purple Day, a day to help raise awareness for Epilepsy by wearing the color purple.  For me, to be honest, I just love any opportunity to make something cute or fun about CDKL5 and whatever situation we are faced with as a secondary consequence.  I picked out Sonzee's outfit on Sunday night, and even decided on wearing purple leggings in advance of 7:00am in the morning.  I went onto Facebook and chose the frame I wanted to display for my profile picture as my first attempt to spread awareness of a day that effects 3.4 million families in the nation.  In fact, according to the Epilepsy Foundation "there are more people who live with epilepsy than autism spectrum disorders, Parkinson’s disease, Multiple sclerosis, and cerebral palsy combined", and as of 2015, the CDC reports 0.6% of children 0-17 have active epilepsy*.

20-40% of those who suffer from epilepsy will have drug-resistant epilepsy, which is defined as a patient with epilepsy who does not become and stay seizure free with adequate trials of two anti-epileptic medications.  Sonzee fell into this category by the time she 2 months old, and sadly not much has changed.  Over 3 years she has been on at least 7 seizure medications, while each new drug gives a sense of hope, reality has said otherwise.  Unfortunately, for some reason each dose change, each new medication, each potential for some relief continues to give me a split second of hope and a subsequent broken spirit.  

It was fitting that for 36 hours (12 of them during epilepsy awareness day), Sonzee had not had any of her big seizures.  It was enough time to get excited, not enough time to truly enjoy the moments, but enough time that I am mad at myself for considering the medicine and VNS changes we just made would actually work.  It was enough time for me to be left wondering how I gave into the false sense of hope again.  My mind filled with the thoughts, "You know better",  "Why did you do that to yourself?", "This is not the first time this has happened, you knew how this would end", my heart is filled with brokenness, aching, and longing for a different outcome for her, and my eyes, they are filled to the brim with tears, again.

If you asked me when I was 4 what my favorite color was, I would have eagerly told you it was purple.  It has always been my "signature color", and if you know me personally, you know it was an accent color almost 10 years ago at my wedding.  Yet for the past 3 years it has become a color that I rely on to spread a message.  Maybe one day there will be a cure for epilepsy, but even then, I will not ever look at the color purple the same.


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