“Showers are not an act of self-care.
Sometimes we act like they’re a luxury, but it’s really basic hygiene – I smell, my hair needs to be washed,
so I need a shower.
Being the mom to a child with uncontrolled epilepsy means I typically try to plan my shower for when
someone else is here to watch him.
But, like a mom, that’s not always possible.
A few weeks ago, I’d had a pretty active day and saved my shower until the end of the day.
My son’s grandma had been watching him all day, and to put it bluntly, it was a terrible day for Wilson.
His only ‘almost’ nap was interrupted by a seizure, which set him up for a horrible afternoon – a day full
of arching, screaming, whining, puking… he was just an inconsolable child the rest of the day.
Wilson’s grandma looked exhausted and it was pretty late, so I told her to head home.
My mom said, ‘you sure you don’t need me to stay while you shower?’
I replied, ‘Nope I got it, go home! He’ll be fine!’
Quick in and out shower, 5 minutes max!
I put Wilson on the floor outside my bathroom – in addition to his severe epilepsy, he also has a visual
impairment, so I set him up with one of our favorite CVI (cortical visual impairment) friendly videos to
keep him occupied.
I jumped in the shower.
While I hate listening to him cry, I almost prefer it when I’m in the shower.
It lets me know he’s still breathing.
But when he’s quiet, I feel the need to poke my head out every minute or so.
He’s non-ambulatory, so he’s not going to go anywhere, but I need to know one of two things haven’t
That he’s had a seizure and is struggling to breathe or he’s vomited and is unable to clear his airway.
So I poke my head out and sure enough, he’s had a seizure, I can tell by his contorted position.
His brief tonic seizures are usually fine – a big movement happens once, he continues breathing and it’s over quickly.
I continue watching for a second from the shower, and see the twitching… it’s a bigger seizure.
For the first time in almost 2 years, I had to jump out of the shower, soaking wet, and get to my child.
Everything was twitching and he was struggling to breathe.
I quickly got him in whatever position his rigid body would allow that made him able to breathe.
I held him as he came out of it, while water from the showerhead kept going.
Once it passed and he was safe, I got back in the shower.
And that’s life with intractable epilepsy.
It doesn’t matter if you want a 5-minute shower or a quick bite to eat or need to pop into a store.
Seizures happen whenever, wherever, and we’re always on our toes to act.
It’s exhausting for Wilson, absolutely no question, but it’s absolutely exhausting to always be on watch. ”
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