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The Monster We Live With (Epilepsy)

The Monster We Live With (Epilepsy)

November, in case you somehow missed it, was epilepsy awareness month. Our journey with epilepsy began on a hot August morning in 2011; until that day the thought that my child might experience a seizure had never crossed my mind.

Over the years, we’ve learnt how cruel this monster really is. My beautiful baby boy, once so smiley and with a laugh that absolutely melted my heart, has had to fight every day of his life. It isn’t just the outward seizures you see, it’s the impact of near-continuous epileptic activity in his brain playing havoc with his development.

It’s seeing him fall asleep during the day from sheer exhaustion, because the monster doesn’t stop just because its night time. It’s seeing the frustration in his gentle face as he struggles to control his limbs, only for another random muscle spasm to cause his arm or leg to suddenly jerk. And it’s holding my baby, long after he’s outgrown the baby stage, gently stroking his hair and whispering that it’s ok, that he’s safe, that we’re with him, as yet another seizure rips through his body.

Epilepsy is incredibly cruel.

However, it is because of this awful disorder that we’ve met some of the most amazing people in our lives. We have an amazing community of friends. Our boy has people routing for him from all corners of the globe. He is, quite simply, our hero. He refuses to give up.

Once the seizures have passed on for the time being he simply gets back to whatever it was he was doing, be that boardgames, LEGO, or watching TV. His smiles are all the more precious because of how much epilepsy has stolen from him. I would be lying if I didn’t say that epilepsy has stolen far too much, and I’d give my last breath if it meant my son could be cured of this disorder; but much as I wish it were me and not him it isn’t possible.

There are still so many misconceptions about seizures and epilepsy in general; no, it is not contagious. He cannot control when the seizures happen. Despite his physical limitations, my son’s mind is as sharp as flint. Having seizures does not mean he is not intelligent, or that he doesn’t want to do things. We just have to be more creative and work harder to make things possible. He’s an appalling flirt. And he is our everything.

If you don’t know seizure first aid, please go and learn it. It’s very simple but it could save someone’s life; it doesn’t matter if you don’t know anyone with epilepsy. At the very start of my son’s life, we didn’t either.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Carolyn Voisey

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Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing more than having time with my family, being outside and with my animals (chickens, cats, dog..!).

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