Let's Be Clear

 Let's be clear from the get-go: I'm NOT an expert. 


Nope. Not an expert.


I am however deep into my 30's, with a variety of seizures in my history and from what I've learned am likely GEFS+ (Genetic Epilepsy Febrile Seizures Plus). 

My daughter, Darling, is a young kid who is also GEFS+.

Daring is still up in the air. He's a toddler, with hard to control seizures in a variety of forms, which all that pointing to Dravet Syndrome ... however (and I'll knock on every piece of wood while being completely grateful & trying to stay optimistic) he's crushing all of his milestones and we hope he continues to do so. I'm sitting, waiting, wishing that these kiddos both turn out to be bright, bold, beautiful, and independent humans with nothing holding them back. (All good things, all good things, please!)


I'm just one person living this life caring for my two kids, also living this life, and I thought I'd share what we've experienced, learned or overheard in case it benefits anyone else or allows you to not feel so lonely/ on your own.


I 100% encourage anyone to take what you read here with a grain of salt and do your own research / follow up with your doctor/ actual experts on anything you'd like clarified or further explained.


Also, if you're an expert and want to share your thoughts or further explain anything, comment or send me a message. We are all about further education and enlightenment!

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