Latest blog The Thief and The Warrior is ready to be read online here https://www.fireflyfriends.com/uk/blog/the-thief-and-the-warrior/
For over a decade now we have lived with a thief in our midst. It comes at any time of the day or night, taking precious memories and skills at will. It is up against a warrior who fights it day and night, with courage that is far greater than anyone of his years should ever have to display.
For a brief period of time in 2011, we were a ‘normal’ family; the shadow that is epilepsy was yet to enter our lives at that point.
Even when that first seizure happened one hot August morning at the children’s centre, and in the weeks following, we still had hope that our boy’s epilepsy wouldn’t impact too deeply on his life.
By December however it was clear that the thief which had already stolen so much of our beautiful baby’s early skills was here to stay.
That is what epilepsy is really, a thief that doesn’t care who you are or what you do. It will come when you least expect it and will knock you off your feet.
The last decade has been a steep learning curve.
Did you know that not everyone loses consciousness during a seizure? Or that focal onset seizures only affect a part of the brain, while generalised ones affect the whole?
I am deeply privileged to have a child who is my greatest teacher and who has taught me what it is to get up and fight the same demons that left you exhausted the day before (and in his case, that didn’t stop attacking even though it was night).
He has the type of epilepsy that comes with claws and teeth – a devastating side-effect as it were of a brain that didn’t quite form as it was meant to. As his mum I carried crippling guilt about that for many years.
After all, my boy’s seizures are relentless… they have stolen his ability to speak, to walk, even to sit unaided. He is unable to swallow safely, and despite multiple medications and the medical marvel that is a VNS he still has multiple seizures daily.
Our children are genuine superheroes.
My boy has a love for life that makes the darkness shrink back, his smile brightens the most difficult of days and his sheer delight and excitement when doing something he enjoys is contagious.
Because each skill learned is a triumph; each achievement, however small, is a victory that deserves to be celebrated from the rooftops! I’ve said it before and I’ll say it again; my son may have epilepsy. But epilepsy does not and never will have my son.
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