My view was that it was related to fits and there was medication to control it, I couldn’t have been more wrong as it is a much bigger picture than this, and everyone's epilepsy is different.
Zachariah was just a few days old when he started with jerky movements and from then it took over a year to get a diagnosis and the correct medication.
It’s a blur to be honest as his seizures weren’t too aggressive it wasn’t the main worry at the time.
The meds seemed to be working and keeping the seizures under control, so I had this idea that as long as we kept up with his meds he would be seizure free.
Whenever we saw him progressing seizures we knew it was time to up the dose and we seemed to be winning.
For many this may be their story, however this was a false representation of Zachariah's epilepsy as we later found out, the hard way I may add, that he had a type of epilepsy that cannot be controlled completely, which may be a familiar story to many of you too.
Zachariah has type 2 Lissencephaly (smooth brain) which means that his brain hasn't fully developed, resulting in many disturbances, one being epilepsy.
The type of epilepsy that comes alongside lissencephaly is one that cannot be treated fully by meds and is relentless, resulting in many children losing their lives to it. Knowing this absolutely terrifies me.
With every seizure comes a new numb feeling of grief that it could be the one that takes his life. His consultant discussed with me the fact that we need to find a comfortable amount of seizures as they are never going to go away.
You can imagine how shocking this conversation was, how can I ever be comfortable with any seizure, let alone trying finding an amount I’m OK to watch him suffer through daily.
I decided that I would like to pursue more meds in the hope of battling less a day than he is currently experiencing.
The issue with this is, the more meds he takes, the more risks there are in other health areas, such as his liver. And the risk of his body getting too used to the meds.
It’s such a cruel bubble to live in, and extremely difficult to find a balance, as I never wanted to be the Mum who just pumped drug after drug into her son.
But I also cannot stand by and do nothing as my son helplessly loses his battle against epilepsy.
Epilepsy is a humongous pain in the backside, comes with a ridiculous amount of worry and fear and is something we could live without.
It is detrimental to my son’s development and takes away the smile from his face. As a mummy, watching his eyes weep, his face turn and his skin colour change, as he fits is the most heart-breaking thing I’ve ever had to do.
It pains me to see my boyo look so helpless as the seizure takes control over his body. I have become the mum who overthinks every activity as the fear of the next seizure takes a hold of me.
But I try daily to rebel against this fear and enjoy the precious moments. Zachariah is a real superhero who keeps on living a happy life, it’s so important to follow his lead and focus on the good times.
Research is so important into tackling this evil disease, so awareness is key.
Please share this blog with your friends and show that epilepsy is still, very much a huge battle that needs to be won.
Lots of love, Rochelle. (My Daily Miracle)