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The calm after the storm

Take me back to one month ago and I didn’t think I would ever be writing this blog. W has been seizure free for FOUR WEEKS! Four, whole, glorious weeks. Today we danced to ‘Backstreet Boys’ in the living room with sunglasses on and hat’s on backwards (though these blogs you might be getting an idea of my very varied musical tastes).

For the first time,in a while, I could breathe.

The funny thing is…I knew that everything was stressful, but until now I don’t think I’ve taken in how stressful it has been.

I have felt rather poorly this week. Completely worn out and able to sleep at the drop of a hat. I decided I was coming down with a bug, but nothing has materialised. I have slept for hours, I’ve cried and screamed and have realised it isn’t a bug. It’s the calm after the storm. I need to assess, redress and rebuild. Self-care is needed.

I still struggle with the unknown of Epilepsy. W’s medication is seeming to control his seizures, but no one can confirm it will continue this way. I feel unsure how to deal with this ‘calmness’ which I realise sounds weird and ungrateful. We are overjoyed that W has had some respite. I realise how lucky we are too. We’ve been able to do all of the fun things we used to do.

Still in the back of my mind I’m waiting for something.

I’m prepared. I’m on alert.

How to deal with these random set of emotions is tricky. My solution is booking in as many random activities as possible. Tubing down the local ski slope has kick started this. You are basically chucked down a slope in an inflatable ring. It’s amazing! Concerts, comedians and wild beach camping is to follow. We’ve promised W that we can camp in the garden when the weather is nice too.

Any other advice from parents who are dealing with the ‘calmness’ would be very welcome.

I hope you all have a lovely bank holiday weekend (when this horrid weather clears)

Love,

Clare x

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