Sure that's typical in a typical household... However , living with someone it's not that easy.
When Eliana was three weeks shy of her 1st Birthday, she suffered from a Status Epilepticus seizure in her sleep. Yes, in her sleep. At 9:00 at night while everyone was asleep including me Eliana had her very first seizure. By the grace God I woke up and just got up and checked on Ana in the dark, placed my hand on her chest and just knew something was wrong. I got up to turn the lights on and I was not at all prepares foe what my eyes were going to see. My baby, Eliana, was a blueish/purple color. Her eyes were fixed to the upper right and was making the softest almost muted
Grunting noise. She wouldn't snap out of it I grabbed her held her, prayed and nothing would snap her out so instantly my father and I started CPR not knowing that would've been a contributing factor in Saving her life.
From that night on I have never slept well at night. My Eliana still sleeps in bed with Mommy. I keep her close with my hand on her chest so
I can feel and hear her breathing. I'm always worried to actually "fall asleep" because what if I don't wake up when Ana is having a seizure like I did the first time, just the thought of that and waking up to my worst nightmare is something I just can't bare to think about. It's so scary to fall asleep, everynight I wake up several times to check on her, I feel my daughters every move , I hear every sound she makes... I feel like I'm always awake waiting for that "bad seizure" to hit. Every morning I wake up nervous , like that ball in your throat and my stomach in a knot because I don't know what I will wake up to in the Morning. Just to wake up to her saying "Momma , get up " ( or something like that) is the best way to wake up because
I don't have to wake up nervous or scared or afraid of how I'm going to find her.
Nap time isn't any easier , I lay my Ana Down for a Nap and mist times
I will just lay with her , awake, and
Making sure she's ok. If
I don't lay with her for her nap I'm constantly checking on her. I don't ever want to much time to pass by where it would be "too late" if she was to have a seizure.
As I'm walking Down the hall To check on Eliana, I always have my phone in case I have to call 9-1-1 , I slowly walk in to the room with my heart racing, my stomach in a knot ... I check on her and relief, she ok. A few minutes later the whole Process starts all Over. It really takes a toll on a person to live like that everyday...
Epilepsy doesn't only effect the
Person with Epilepsy it effects caregivers and the family and friends
Around them. You never know when a seizure will present it's self and you always have to be prepared day or night. It's draining, it's stressful , it's scary it really makes you appreciate the small things in life that we often take for granted... What would I give to find a cure for Epilepsy ! So my daughter and everyone who suffers fro
It could live a "normal" life.
I know my baby get tired of being always watching and asking "are you ok?" One day my baby will grow up and will want her space, It's terrifying to me to give her That space, to have her sleep in her own room or have sleep overs. I have saved my daughters life twice because I have ALWAYS been there...
We need to find a CURE for Epilepsy I love my daughter , I will always be here for her and
I wish I can give her the greatest gift of all , A Cure. But we can all help and
Find
One together if we just get educated and spread awareness!
Check out Eliana's video on YouTube
Eliana's journey with Epilepsy
Eliana , sweet dreams baby! I love you with all my heart!
Tomorrow we will be on our way to get some Answers! We'll Keep you posted
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