I wrote the following words for Purple Day, the International day for raising awareness of epilepsy. I wanted to try and capture what epilepsy means to me, my daughter and our family. Everyone has a different experience of epilepsy and I know many people refuse to let it beat them or stop them doing things and I admire that determination and that is how it should be. 

Obviously epilepsy is not a living breathing thing. If it was my non - violent tendencies would be challenged daily.

To me it is like an odourless and invisible gas that can seep through the smallest of gaps and cannot be contained. 

It is everywhere but especially in the flashbacks of moments in Lou Lou’s life that would be on constant replay on my mind if I let them. 

So to me, epilepsy is sitting alone in a room with a box of tissues having just heard that your 10 week old daughter has 'severely abnormal ' brain activity. 

Epilepsy is not seeing your child smile for two years and then not trusting that smile when it returns as you've convinced yourself it's a new type of seizure.

Epilepsy is sleeping with the white noise of the video monitor inches from your face as seizures can happen any time day or night. 

Epilepsy is spending your first Christmas alone as a family. Not because you want to but because you're too scared to travel with a child and her almost constant seizure activity.

Epilepsy is comforting your older daughter in your bed while an ambulance crew are in the bedroom she shares with her little sister. And holding her close when you've just watched the ambulance take her sister away in her Daddy's arms. 

Epilepsy is jumping at the slightest noise or panicking when a noise stops as you turn your back for a minute to make a cup of tea or chop an onion. 

Epilepsy is a white coffin too small to comprehend.

Epilepsy is stress and tears and frustration and more tears.

Epilepsy is a vicious, cold, heartless, wicked, nasty, murderous beast and I hate it.

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