Every time she has a seizure, there is a voice in the back of my head that whispers my most terrifying fears. Over the last few years, after countless seizures, I have learned to manage that voice. I have built emotional walls and intellectual buffers, soulful charms and spiritual amulets to ward it off, to keep it at bay. Over the last few years, I have managed to confine that dark, horrifying voice to a small piece of mental real estate in the far recesses of my brain..
But it is always there.
Waiting.
Its presence is palpable.
And when the seizures do come, it whispers with evil intent. It knows that despite the walls and buffers and charms and amulets, I can hear it.
Most of the time the voice is low, distant. It has become something I can uncomfortably live with. I hear it, but I do what I can to ignore it.
Every once in a while though, a seizure will last longer than usual.
And then the voice gets louder.
Every once in a while though, there will be no verbal response from my baby girl for four, five, six, seven minutes or longer.
And then the voice gets louder.
Every once in a while though, the positioning of her body will cause her to choke, in turn, making it difficult to breath.
And then the voice gets louder.
Every once in a while though, her lips will turn blue.
And then the voice is screaming in my head – screaming my worst fears.
This afternoon was such a day.
***
And then things are back to…”normal”.
I don’t even know what normal frakking means anymore.
She laughs, she squeals, she skips, she laughs.
I smile, I sigh, I love, I force a smile…
Because the voice…the voice is always there.
Run Luau Run 