Life is full of ups & downs. It’s important to share the downs as well as the ups, to give perspective & not a false reality that everything is always great; so others in the same shoes know they’re not alone and to spread awareness.
We’ve been transparent about Rio’s seizures; they’re part of his/our life; but still after 20 yrs they never get easier to witness.
The worst is not knowing really how seizures effect him, as he can’t tell us; then imagining how frustrating/scary that must be for him, to have to keep his feelings, fears, thoughts, all internalised; no one to vent or cry to or ask questions to.
I often wonder - is he aware he is about to have one but can’t tell us? Does that stress him? Is he in any discomfort? How is he feeling after? We know they drain him as he sleeps heavily after but what else is he feeling that he can’t tell us?
Yesterday was a first, that could be seen as achievement yet with a heartbreak of realisation.
It’d been a stressful day, there was tension amongst us; Rio picks up on this, so maybe he was stressed? He was sat on the sofa, he looked at me & said ‘seizure’ & tapped his head.
I’ve taught him to say & sign the word seizure, in hope it’d give him the tool to communicate when needed. He occasionally says/signs it ‘after’ he’s had one - so we knew he’d made the connection.
When he said it yesterday, I hadn’t witnessed a seizure, so thought maybe I had missed a short absent seizure or he was just saying it for the sakes of saying the word, which is a possibility.
I replied, “Did you have a seizure Rio?” & gave him a hug.
He was quiet & said, “It’s Ok” (he says this when he isn’t feeling good; as when he is not well I say to him “It’s ok Rio, I’m here”).
Then he waved saying, “Good bye”, which seemed odd; and 30 secs later he slipped into one of his unconscious seizures.
Heartbreaking to witness & a realisation he knows he’s about to have a seizure; but what was he feeling, was he scared or in discomfort?
Very proud of a step forward in communication for him but heart shattered at my hopeful denial that he’s not aware.
All good now, he had a great sleep & back on form!