Purple Day
Miriam Gwynne
Full time mum and carer for two truly wonderful autistic twins. I love reading, writing, walking, swimming and encouraging others. Don’t struggle alon...
It’s just a day to you.
A day you might share a picture or link on social media.
A day you might see a newspaper article on someone like my son.
A day you might send your child to school wearing purple.
A day you might watch someone talk about ‘purple day’ on daytime TV.
It’s just another day, another ‘awareness day’, another fleeting thought as you are reminded briefly of someone you know or might have heard of with epilepsy.
Maybe you are one of the rarer people who are willing to fundraise because purple day means something more to you?
For most though it’s just another day.
For years it was the same for me.
That was until my son had his first seizure. Then another. Then another. Until doctors began asking me to video him. Until he was invited for tests, one so upsetting he spent days with wires attached to his head at the tender age of just 4.
Until epilepsy became a permanent part of our lives.
Purple day now is completely different.
It’s a day when epilepsy isn’t hushed or forgotten about or its effects minimised. It’s a day I feel I can actually talk about what life is like for my son, how every time he leaves the house we have to risk assess how safe he is.
When for once I can admit how many school days he loses through seizures or sleeping them off. How accessing certain things now as a young adult isn’t possible because no one will fund the 2 to 1 adult support required due to his unpredictable seizures and subsequent behaviour.
It’s a day we can finally be open about the struggles to find the right medication and the awful yet necessary side effects he has to live with daily.
Purple day is just a day to you but for my family, and many thousands of others, this is our everyday.
If only my son’s seizures were as rare as the annual awareness day that highlights his condition…
