I’m a planner. I write lists. I check them twice (or more). I prepare for most situations way before they happen. Epilepsy doesn’t suit this. Epilepsy sneaks up; it’s unexpected and with W seems to be for absolutely no reason.
I haven’t written a blog for a while, as I frankly don’t know what to write. I have no answers. I don’t know what’s going to happen or what the next steps will be. All of his tests have shown nothing so far which is great. I felt like a weight had lifted and his seizures seemed under control with medication.
Then the absences began.
We had a week of random absences and I concluded he was tired and things would settle after he had rested. We returned to Neurology last Wednesday and they confirmed the absences and upped his medication. Again I thought…it’s ok it’ll all be controlled soon. The increase in medication seemed to trigger ‘Night terrors’ which again left us all exhausted. He then suffered another longer absence this Friday – I was at work.
I told people at work I was tired (which wasn’t a lie) but I just couldn’t verbalise it all again. It’s hard for people to understand. You don’t want to always be the ‘party pooper’ and I didn’t know what to say.
I just couldn’t speak.
We are having to live with the fact that things are completely out of our control.
‘Is he going to have another seizure?’ I don’t know
‘Is he going to grow out of it?’ I don’t know
‘Will the medication control them’ I don’t know
‘Will it affect him when he goes to school?’ I don’t know
‘What type of Epilepsy does he have?’ I don’t know
I know this is the reality of Epilepsy for many. Sometimes there is no reason. We’ve got to live with the unknown and get on with it. I’m determined that it won’t define him. I’m determined that he will be a care free toddler and won’t lose his infectious smile. I’m determined that we will keep fighting on and together will raise awareness of Epilepsy.
Lots of love,