November is Epilepsy Awareness Month, so today I’m sharing my story, a mom’s story of epilepsy.
Sometimes I struggle. This past year has been very difficult. Sometimes I don’t know what is ‘better or worse’ anymore, everything just is.
I’ve come to accept that my daughter’s life will not be the one I dreamt of for her.
I’ve come to accept my goals and dreams also die with epilepsy. I feel I’m still mourning this loss and coming to terms with it all. For the first 10 years after my daughters’ diagnosis, I fought and I fought hard. I thought I could cure my daughter through sheer will alone.
I’ve come to accept finding my daughter’s twisted and contorted motionless body.
I’ve come to accept the absence of breath that comes with seizures. The terrifying blue colour of her skin, the whites of her eyes and her post seizure cries. I can now accept that I can’t be there for every seizure.
But there is one thing I cannot accept. And that is death that can follow a seizure. I refuse to accept this part of epilepsy. Not my baby. I will never let epilepsy take my child.
My greatest truth is my greatest fear in this life of mine, the fear of finding my daughter dead. This thought crosses my mind every morning. This terrifying thought has crossed my mind every morning for 16 years.
Sometimes being an Epilepsy Warriors’ mom isn’t an easy job. I have different fears, different challenges to overcome. I may not have epilepsy but it sure has had me.
Renee Marlatt, Langley Meadows