It’s exhausting. Honestly, some days I wonder how we keep fighting. Some days I want to give up because I am frustrated and I am tired. The constant nagging of not knowing what is going on gets exhausting. But as I was pulling his meds this morning, waiting on a return call from his neurologist I thought – If I am this tired of being scared and not knowing and the constant fight, imagine how he feels.
But he’s not. He keeps going. Fighting.
And I thought of Diva, how she would feel if he quit fighting. If we all quit fighting. How when and if that day comes she will just be destroyed without ‘her baby’. Because that’s what her two year old brother is to her – she refers to him as ‘my baby’. Come here my baby. Hug me my baby. Mommy, what did you do to my baby – and don’t tell me you ate him again. (love playing hide the baby).
And then I thought about how I would feel in that moment. And the air rushed out of my chest and my eyes filled with tears. Just the thought literally sucks the air out of the room.
So every bit of fear, frustration and terror of it all is worth it for every second we get to stay here in our world. Its rough and its tough on everyone. We have a new nurse and her first day of work ended up being in a ER with us post seizure. And she just kept remarking on how much of a trooper Diva is. How at 10:30pm on a school night she was still going. She was calm, acting like a good child despite being cooped in a ER room for hours. Not a ‘normal child’ who would be climbing the walls and going stir crazy by that point (with every right!) but seemingly on her best behavior.
It’s a rough life. And its challenging and frustrating. And down right terrifying because every moment is focused on life and death. Death. It’s a staggering word on a typical basis – but in the same thought as your child, its a debilitating word.
So today, we take on the seizures again. Not knowing why or for how long this time.
But the moments are worth the fight. So we battle through the exhaustion and the fears and the frustration. Mommy puts on her big girl panties and we strive to LIVE another day.