Tag: epilepsy

Standby or Stand Down?

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.

Seizure Mama

 

Stair Pairs

We would not allow Rose to go up and down the stairs in our home alone.

Her seizures were sudden and strong.

Her arms would go out straight and stiff as she dived face first into the floor.

To be sure she was not alone on the steps, we devised “stair pairs”.

As she went down, someone was directly in front of her.

She would put her left hand on her partner’s waist. Both persons held the handrail with their right hand.

It was like a down-the-stairs dance.

The same was true of going up the steps, except in reverse.

The partner would be in the back with his/her hand on Rose’s waist.

Everybody knew the drill.  All she had to do was call for an escort.

Safety on the stairs.

Seizure Mama

Echo Whistling

When Rose was deep in the throes of epilepsy, she had to be monitored constantly.

At first, this required calling her name for a “What?” or stopping whatever I was doing to go look at her.

Then we developed the game, Echo Whistling.

Every few minutes, I would whistle two random notes,

then she would echo the same notes back.

I only called her name when I wanted her attention.

The check in took a fraction of a second and we both went on with what we were doing.

When there was no response from her, there would be seconds of panic until I could get to her and look at her. She was usually busily playing.

We “echo whistled” for years, it was a habit for us both.

Sometimes I would hear her whistle in her sleep.

I wonder if I did too?

Seizure Mama

 

 

Would You Read It?

If I wrote a book about Rose and me,

would you read it?

If I wrote about her sorrows and her joys,

would you read it?

If I told stories about her falling down and rising up,

would you read it?

If I shared secrets of her resilience and strength,

would you read it?

If I let you in on how we survived epilepsy, the enemy, for twenty years,

would you read that?

If I divulge our tricks and secrets,

would you read it with relish?

If YOU need this book,

then I will write it for YOU,

because we are on the other side of epilepsy.

Since you are still struggling,

I will look back at our journey and share our stories.

Seizure Mama

 

Fear of Fevers

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.

SEIZURE MAMA

 

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