Bacon, Eggs and Toast, If You Please!!

This post is dedicated to ALL the Dravet Tiger Kiddos and their parents, and especially to one named Hailey who is deep in the fight right now.  I am pretty sure Hailey's mom won't mind me telling just a bit of her story, something that I think is a perfect example of how our Tiger Kiddos simply astound and INSPIRE us with their resilience.  Today in the hospital, after having had at least 14 gand mal seizures in a few hours time, with a smile Hailey asked for some bacon, eggs and toast!!!  This is also after already having been in the hospital for days and days, fighting through seizure after seizure and more meds than most people could ever imagine.  When I saw her mom post that story about Hailey, I couldn't help smiling, even chuckling a bit and telling God THANK YOU!!  I, of course, then thought of Olivia just days ago in the hospital after her Christmas status episode, and how despite MULTIPLE reasons to be either passed out or in a very understandably foul mood, she greeted everyone who walked in her hospital room with sweetest "HI!" and half-smile she could muster (half-smile b/c her face was either paralyzed or too weak, depending on what time of day it was).

This is a resilience of spirit---a resilience deep down into their SOULS that I cannot fathom.  I can only stand in wonderment of.  I can only be thankful to be so close to a person who possesses such a gift.  It is SO easy to focus on the terror of Dravet, because it is SO awful and for so many it doesn't take a day off.  But, I am taking this moment to honor the spirit of these amazing children (and teens and even some adults!).  All they have known is this fight, and yet they FIGHT!!  It isn't as if they had a normal life once and they fight to get back to that place.  They don't even fight for the same reason the parents fight--that parent/child bond, the thing you would literally DO ANYTHING for.  They fight because that's what is in them.  That is how they are wired.  They fight because the light inside of them demands to shine!  They literally fight for their lives, often!!  And AMAZINGLY, ASTOUNDINGLY, BEWILDERINGLY, WONDERFULLY, HEART-WARMINGLY.....when the fight has settled down for the moment, they look at you with a beautiful smile and ask for some bacon, eggs and toast!!!  (or something Keto diet-friendly :o))

So, in this moment.......I honor the warriors of Dravet.  You are all my heroes.