Showers Are Not My Self-Care Time

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“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

happened:

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. ”

little boy watching his ipad while mom showers
Courtesy of Heather

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