The Nature of Epilepsy
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...
He came downstairs like every other school morning to get his breakfast, get dressed and get ready for the school bus. He never made it onto the bus though.
Epilepsy decided to strike again.
Sadly that’s the nature of epilepsy and there’s nothing we can do to change that.
We can go months, even years, without thinking about it but then suddenly, when you least expect it, you hear that cough, see his mouth foaming, hear the fall, watch his body go rigid, and your heart sinks.
It shakes you to the core.
It’s frightening and clouds all your plans for the future. It shifts everything back to protection mode, hyper vigilance mode, safety mode. It means having him watched at all times via a monitor, tracking him, even watching when he’s eating.
That’s the nature of epilepsy. It doesn’t care how it impacts either my son or the rest of his family.
It’s that sinking feeling of deciding if and when he might need medicated again when he has no means of communicating how he’s feeling or what he’s experiencing.
It’s that fear that something even more sinister is at play like it was before when a scan discovered a massive brain tumour years ago.
It’s the worry that this might be the new normal, that his progressive genetic condition has reached a stage whereby this is how things will be from now on.
It’s sending him to school always living on edge for the next phone call.
It’s ordering new mattress protection just in case, bulk buying sick bowls, making sure the thermometer has new batteries (in case the next seizure is brought on by a temperature spike), ensuring a mobile phone is always charged and in credit, keeping fuel in the car just in case.
That’s the nature of epilepsy. It impacts the entire family and makes you re-evaluate everything.
It’s updating seizures plans after every seizure. It’s second guessing yourself wondering if you missed a trigger, stimulated him too much the night before, didn’t notice a sign when he woke up.
It’s doubting your own mind and feeling like a failure as you helplessly watch him go unconscious, shake, foam, jerk then sleep so deeply for hours that he’s left confused and disoriented.
It’s that endless debate of how often is too often and when do we consider starting, changing or upping medication.
It’s waking every morning wondering if he’ll make it on the bus today again or not.
That’s the nature of epilepsy and that’s our daily life here with our non speaking son.
