When IT Comes Back

I was reminded by one of my other mothers how I felt

when IT came back.

A seizure happens after a long seizure-free spell.

You are thinking that IT has finally left her alone.

It throws her down while you are not there.

She is injured, you are shaken.

At some point we have accepted that IT will be back.

We will not let it steal the time in between.

We will do what we want and be who we want

until IT returns.

Getting back up is the most important part.

IT will NOT keep her down.

Flower

Attached is the post I wrote when Rose had her first seizure while away at the university. I was sad and angry and scared…

https://seizuremamaandrose.org/2018/11/12/battle-ground/

 

Remembering for Three

A pregnant woman eats for two.

That is important, but not as complicated as remembering for three.

I spent the last four days with my family.

This included my daughter, Rose, and my mother.

We can be called forgetting, forgetful and forgotten.

My mother is 87. She is forgetting the present. Her past is perfect.

I am 52 again. I am very distracted by life. I am forgetful.

Rose has spent most of her life on anti-seizure medications.

Most of those drugs did not stop her seizures, but did stop her memory.

Much of her childhood is forgotten..or remembered incorrectly.

It is hard to be me…remembering for three.

But we have each other right now.  We have now.

That is worth remembering.

Flower

Our Portrait Without Her

It has stayed in its envelope.

We move it about.

“Put is somewhere.” he says, “It will get bent.”

It is our church directory portrait without Rose.

She was away at the university.

We three went to pose for our family portrait.

But our family has four.

It is a photo of my worst fear.

The three of us with no Rose.

This photo is lovely,

but it will never find a frame.

 

Flower

 

Fear Says No

Rose called to ask if she could go on a trip with friends.

My fear wanted to say “No.”

My mind was thinking: it is too far away, it is a strange place, I do not know these friends…

I kept my lips silent.

I will not share my fears with Rose. She fights her own fears.

We must be brave, Rose and I.

Caution is smart, fear is stupid.

Caution says maybe, but fear says no.

Rose has heard enough “No’s.”

I will not let fear speak for us.

I will not say no.

I will let Rose go

on her first trip with friends at age 26

to a new place far away from her mama.

It is time.

Rose is ready.

 

Seizure Mama

Stop this Snake

I have a sneaky seizure snake

coiled in the back of my mind.

It stays put most of the time.

Sometimes it strikes

with electrical venom

and shocks my brain.

It slithers through my thoughts

and steals them.

I wish someone strong

could put a heal on the head

of this seizure snake.