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)


Clare x

3 thoughts on “The calm after the storm”

  1. Clare, I love your blog!
    We have fifteen years on you and I can tell you that the stress, uncertainty, exhaustion etc. of the storm will possibly never pass. You may be living the rest of your life on alert.
    However, you have managed to do something that it takes others years to do. You have recognised and embraced the calmness.
    We all know that the calm AFTER the storm is so often also the calm BEFORE the storm, but every seizure free day is a day worth celebrating.
    Keep dancing with those hats on backwards and wearing your sunglasses – in the house and in the rain!

    Liked by 1 person

    1. This is so lovely. Thank you. Backstreet boys, sunglasses and hats whilst dancing when it’s raining outside are the way to go I think. Here’s to seizure free minutes, hours, days, weeks, months and years xxx 💜

      Liked by 1 person

  2. I felt every word. You think the medication is working until you know it is not. Celebrate every good day. Do not wait for epilepsy to be over. The time between seizures is your life. Our family is in it twenty-four years and counting. We are not who we would have been without it. We are better.
    Peace to you Mama Clare and a hug for that precious W.


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