After all this years dealing with Gabi’s epilepsy and various types of seizures she is having daily, I’ve always felt lucky because she never had grand mal.
I have only saw it on TV and Internet,I’ve read about it, I’ve thought about it and deep in my heart I was hoping that I would never see it.
But…. this stupid disease has no mercy. Not a bit. Second day on our holiday vacation, at 5 am Gabi had first grand mal.
She was shaking in her bed, rolled her eyes, drooling, looking like she was dying.
I saw so many seizures in our epilepsy journey but this was something that left me paralyzed. I was watching her so helpless few seconds. It was only few seconds when I was standing next to her and my mind was full of all the scary thoughts. Is she is dying? Is this disease progression? Will she ever recover? Is her brain more damage? What if this won’t stop? Is this the moment when I need to say goodbye?
It took only few seconds until I rushed to find emergency medicine and give it to her and seizure stopped immediately.
We were “lucky”.
But as everything in this disease, nothing happens without major consequences. Since that grand mal she is very poorly. She can’t hold her head, she is tired but can’t sleep, she can’t eat or drink normally.
I am trying to act normal, trying to enjoy holidays because of my son, but deep inside I am trying to pick up the pieces like a numerous times before. Trying to put this in our new normality and say goodbye to life before. It is always so hard, but in this disease you have to do that thousands of times until the last one.
So, we are “enjoying” our holidays. Gabi is relaxed in her pushchair, enjoying the heat mixed with summer wind. Vigo is playing and screaming, just like every other toddler and I am writing this post, looking at my bag where I keep emergency meds, thinking when it will be that I will need it again.