One Voice together.
What a week so far.
Bad cold and Partial Seizures for Son this week. The high temperature is causing the many partial events.
My doctors appointment cancelled yet again.
The Guardianship process to be implemented with Solicitor, two appointments cancelled this week. My Son will always require 1:1 support and supervision. Epilepsy seen to that.
School to be contacted. So many things to do.
MY ROLE as mum and carer 24/7 is to make sure he is happy and content. Everything stops when your child is ill. You would go to the ends of the earth to make it all go away.
Epilepsy is just one ambiguous condition. You never know when it's going to strike. It's ruthless - it takes control without asking.
Others have not a clue what to do or to expect. I've stopped explaining to people. Don't have the time or the energy. If not known after 15 years, they'll never understand. Way it is.
Why oh Why will there not be more help offered to sufferers and their carers/families.
It's not a mental illness. It's a neurological condition affecting millions world wide.
It cannot be acceptable for another generation to go through the ambiguity and stigma attached to Epilepsy.
Sufferers need to unite and make their voice heard.