Diagnosis and medication, Epilepsy and parenting

No words

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,

Clare x

3 thoughts on “No words”

  1. Oh Clare, another one of your blogs that I could have written.
    Living with epilepsy absolutely feels like your life is out of controls. There are days when you are struggling, in go-slow mode, when it feels as though you are jerking going up the ratchet-jerking hill at the start of a roller coaster ride; days when you feel like you are on that tiny little flat bit at the top, wanting to enjoy the calm, knowing that you are teetering in the edge of something scary; and then the days when WHOOSH!, you career down the other side, feeling as though you have come off the rails, travelling at heart racing speed, screaming at the top of voice but no-one can hear you and no-one can help you and then you feel as though you have crashed, your heart in your mouth, feeling sick to the bottom of your stomach that is no longer there.
    You may be asking those questions for many years to come, maybe forever, as epilepsy can change over time and likes to keep you guessing. We are still asking them 15 years on.
    Yes, you do have to get in with it.
    No, W doesn’t have to let it define him.
    Your determination will get you through it and together the Purple Family will raise awareness whilst sharing our stories and supporting each other.
    Lisa x💜

    Liked by 1 person

  2. ‘Right Words’ should be the title. I have felt all of that. Rose has had seizures since she was 18 months old. She is 26 now and away at a university. Many seizures and many medications are in her past, but she is great. Little W will be the best he can be because he has you Mama Clare…or should I say Mama Bear?

    Liked by 1 person

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