Epilepsy Awareness Month.

Epilepsy. It's a word that you here a lot in our house. I don't talk a lot about James having epilepsy here because it's his medical information and when he's grown up he might not want that information out there for all to see. However with November being dedicated to this illness I wanted to write a bit about it. 

Before 2008 Epilepsy, to me, was the kind of seizures that you see on the television. The 'typical' seizures. People lying on the floor, unconscious, and their muscles contracting uncontrollably. These I've learnt are Grand mal or Tonic Clonic seizures. What I didn't know back then was that there are so many other kinds of seizures. Sometimes a certain tic that a person has can be a seizure. Epilepsy is so broad and there are so many factors to it. 

James has two types of seizures. The main type that he suffers from are called Absence seizures, I call it 'The lights are on but nobody is home.' To many people it may just look like James is staring into space. He stops what he's doing and his face is vacant. No amount of calling to him will snap him out of it until the seizure stops. His first seizure that we were aware of was when he was just over a year old. Sixteen months ago he started having grand map seizures but only in his sleep. To this day, thankfully, he has never had one whilst awake. 

We are still learning all of James' triggers. So far we know that if he gets too hot or is in the sun for too long then that is the biggest trigger for him. I feel so bad that in the heat of summer I have to keep him indoors or in the shade. At school, the teachers know that unless James has a sun hat on he cannot go outside. He has to have a drink bottle filled with water with him at all times at school and he can drink as much as he wants, whether in class or not. 
He is also photo sensitive, the doctors believe that this is why the sun is a trigger for him. 
As time has gone on we now know that if he gets overtired or over hungry, that can bring a seizure on. I am on constant alert with James, always watching and always ready. 

I try so hard not to make James feel different from other children his age. He's not different. 
Last month his seizures starting coming more frequently so after a trip to see his paediatrician and a dosage change on his medicine, things seem to be coming back to normal. I don't ever want James to think that this illness has to hold him back. It doesn't. I don't ever want people to look at him differently or to treat him differently because of it. He's funny and intelligent. He's terrible at keeping secrets. He loves to give cuddles. He's moody in the mornings but full of beans at bedtime. He will eat me out of house and home and still tell me that he's hungry. He loves football. He is terrified of needles. He has a sweet tooth like me and loves twiglets like his Daddy. He loves to hear about when we lived in London but hates the thought of us moving from our current house. He worships his sister and says that his Granddad is his best friend. He wakes up telling me that he doesn't want to go to school but literally runs the whole way there. He is a sore loser. I think if I'd let him then he'd never take his football shirt off. He loves to dance but he gets embarrassed if too many people watch him. His Dad is his hero. His best friends at school change daily. He is sweet and kind. 

He is a normal five year old boy...

1 comment

  1. Love your last paragraph. So beautiful.


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