Juvenile Epilepsy Awareness

Very anxious about this update. 🤞🏼💜🙏🏻🌈

Hello everyone! Forewarning.... I’m coming out of my comfort zone tonight.   It’s usually a rule-of-thumb that we don’t talk about these things but I have to practice what I preach.... so here it goes! I have to be honest.... I’ve been putting this post off.  The news is too exciting.   Yes you read that correctly.... “exciting”.  It’s all about HOPE!   It’s so hard for Epilepsy mama’s to become “too” hopeful! Most of the time we are living in a plateaued state of anxiety that becomes the norm.  Livable, okay, accepting, but with an asterisk! Bella has been seizure free for 7 weeks.  I hate to write, text, verbalize, or even post these milestones.   As I stated before, Bella presents with 3 seizure types.    She has not gone this long without even a silent seizure in years. YAY.  I’m going to stop right there on that note! 🤞🏼🤞🏼🤞🏼🤞🏼🤞🏼
       The other day  I saw a post that knocked me on my ass and hit me in the gut.   It’s hard to read. It’s hard to relate but it’s so true and it’s terrifying.   It made me feel like I wasn’t alone in the subconscious reality of Epilepsy. I am allowing myself to be vulnerable and give into hope tonight.  This post hits me more because, Bella’s main form of Epilepsy is nocturnal/ refractory.  I am sharing this in the picture connected to this post to let YOU KNOW YOU ARE NOT ALONE!  It’s ok to not be ok sometimes but don’t live there.  Find your network and advocate for the best treatment!  That means for the patient and caregivers.  I want to end by sharing that we have connected with 2 new families. One in California and one that is local.  Thank you all for forwarding our contact information.  We were able to connect both families with Bella’s NYU team immediately.  💜. The world really can be small at times.  I’ll end with a positive!  I was able to spend the weekend with Bella and her roommates.   It was just what we all needed!  Lots of laughs and photoshoots!  #epilepsyAwareness 💜🌈

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