I need to confess this to you, because you are probably doing it, too.
I am a “sand shoveler.”
One of Rose’s doctors used this analogy about one of her treatments.
He said, “We were shoveling sand against the tide.”
It was one of those moments that got frozen in time and tattooed into my memory.
Not the kind of description you want to hear about your child’s treatment.
Imagine for a moment, standing in the tidal zone, frantically shoveling sand
as it shifts anew with each crashing wave.
No matter how many shovels full that you dig, no matter how big the shovel,
you will NEVER make any progress.
But you just can’t stop because this sand needs to be moved and these mountains need to be moved because they are in your baby’s way.
You insanely keep going, because stopping would mean surrender.
Tenaciously fighting a losing battle.
I have learned to periodically pause and assess my effectiveness.
Here is today’s stupid example of my shoveling sand.
There was a smudge on the glass door.
I wiped and scrubbed over and over, until I figured out it was on the outside of the glass.
No matter how much I cleaned the inside, it would never matter on the outside.
Now back to you.
Are you trying to earn a seizure-free day?
Do you have a list of hoops to jump through?
Take all medications on time. Always have nap time. Eat healthy. Drink enough water. Don’t get too hot or too cold. Avoid emotional outbursts. Don’t get too tired. Avoid germs.
Jump. Jump. Jump.
Blame. Guilt. Sadness. Try harder.
Guess what? You can’t fix this yourself.
The right medications and avoiding known triggers is the only way to improve this.
Shoveling sand won’t do anything but break YOU.
Washing the wrong side of the window will never remove the smudge.
If your child had diabetes or asthma the treatments would be straightforward.
Epilepsy is a mysterious beast. It’s too complicated to kill.
So we kill ourselves instead.
Because we have to do something!
STOP shoveling sand!