Wednesday, August 12, 2015

I've decided not to "blog" anymore. I started blogging inspired by other like minded mamas who talked about gardening, chickens, writing etc and then when Paloma was diagnosed I decided I needed to only write about her epilepsy.  Eventually, I felt like I needed a vent for all the other crazy stuff in my head I decided to write about my faith crisis, how I stay sane etc but it never felt right in this space. One of my favorite bloggers Elizabeth http://elizabethaquino.blogspot.com/  is able to combine all parts of her life, including her daughters epilepsy quite well without it reading discombobulated.   I haven't figured out how to do that yet. 

I'm going back to college in a couple of weeks to try and finish my creative writing degree. To say I'm scared shitless would be an understatement. But, I have to try or  I'll always have regret. I may find that I'm the worst writer who ever picked up a pen and I have no business even entertaining the thought of  trying to write. But I would much rather find that out while trying rather than  sitting around the rest of my life scribbling little poems that will never see the light of day, always wondering.  I love this quote by Georgia O'Keeffe, 

     "I've been absolutely terrified every moment of my life - and I've never let it keep me from doing a single thing I wanted to do." 


It's my new mantra.  Part of me feels guilty for wanting to go back to school. I feel guilt for anything that draws my attention away from Paloma.  For the past two years I've sat at her feet and watched over her like a shrine.  I've watched her breathe, making sure I saw the rise and fall, always waiting for the next seizure to strike. I've barely left my house and if I have its only been short excursions out. Epilepsy lends itself well to my hermit, reclusive sensibilities but even still sometimes I just want out. I want to have conversations with people that don't include the words seizures or weaning or shit, even cbd. My book reading has been limited to reading about epilepsy, health, die and healing for the past two years. I haven't read a damn novel in I don't even know how long.  I'm ready to start living again.  How to do that within the confines of my daughter's diagnosis I still haven't figured out yet but I'm going to take the first step.  


Within the Dravet community there are very little stories of hope.  On our Facebook support group  talk of not doing pharmaceuticals is met with anger and criticism.  I made myself an outcast in that group pretty quickly.   So I will continue blogging about Paloma in hopes that it may help or inspire other Dravet parents who want to take another route other than pharmas.  Its a story that needs to be out there in universe. I'm thankful I found out there was another path I could take early on. 

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