It is a very hard call for a mama of a child with a condition like epilepsy
to know when to stay close on standby
or back off and stand down.
The mother instinct is strong,
but I did not want a weak child.
It’s been hard to watch the knocks.
It’s been hard to let her fall.
We stand down almost all the time now. How, you ask?
We let her fall years ago. She got back up.
Her seizures were never hidden. So there was no secret to protect.
She is so resilient. That is what makes her able to be independent.
Seizures seized enough minutes of her childhood.
They should not be entitled to the rest of her time.
This is the post excerpt.
If fevers caused the seizures, then all we had to do was stop the fevers.
So we watched diligently for the flushed face. Felt the forehead.
At the slightest hint of a high temp, we pulled out the ear thermometer.
If Rose had a fever, she got liquid product to bring the fever down,
These were usually red or pink. Did they contain RED 40 dye?
Were we actually causing what we thought was a febrile seizure by giving her medication with Red 40 in it?
We didn’t learn that Red 40 was one of her triggers until two decades later.
I can’t beat myself up over something no one knew at the time.
There were twelve febrile seizures before the big one that changed everything.