Watching your newborn baby make movements he can't control and you can't stop is soul destroying. Watching as his little body shook and his eyes flickered broke me.
I will never be the same again because watching my child seize has forever changed me.
I feel like I am in a heavy abusive relationship with epilepsy.
One that I really don't want to be in. One that makes me so mad and angry.
It makes me cry and feel helpless. It has taken many of our special days and tarnished them with its ugly being.
Robbing my child of his childhood. Taking away skills that he's learnt.
Epilepsy is the person I wish I'd never met. One that I wish hadn't come to our party. It makes me sick with worry about what it will do next.
How it will appear and the effects it will have for the future. Its a dark being that just lurks in the corner waiting to arrive when it's not been invited.
It has timing that is really bad. It lasts for minutes but it's effects last forever.
It comes at any time of day and it turns up sometimes unannounced. Some days it sends a warning that it's coming, like nasty letters coming through the door.
It's kept us house and bed bound for so many days. It tells us we can't go to things we have planned and it makes us fear those times when it does allow us to go out.
It is constantly there, poking over our shoulder, waiting to attack at any minute.
Every single day it pops up and spends some time with us. It's very rare it leaves for a day at all. It hardly ever goes on holiday leaving us for a nice break.
It sometimes works part time and has calming periods but then it comes back fighting and ready to cause a stink.
It really does suck having epilepsy a part of our everyday life.
If I could take anything away from Ethan it would be that. I would allow him to have no times where he was scared, his body moving without his control, his memory being wiped, his head building up and essential exploding.
I will never give up hope that I may be able to make epilepsy leave. But I guess for now we're keep throwing things at it and hope it leaves the party soon.