The Art Stayed

Rose was home bound several times during her twelve years of public school.  It was during these periods that we saw her academic struggles up close.

She would go from knowing her multiplication tables to not remembering them, but the art stayed.

Rose could spell words one week and forget them the next, but the art stayed.

She would read a story and forget the names of the main characters, but the art stayed.

When everything else seemed to be flushed from her brain by seizures and side effects, she could still mix a perfect flamingo pink paint and create beauty with her shaky hands.

There were times when we gave up on academics and just did art.

When nothing would go in, the art still came out.

Her teachers were understanding through these roller coaster rides.

When she was stuck in the Epilepsy Monitoring Unit for days at a time, Rose made hotmats. She asked the healthcare workers which colors they wanted and custom made them for people. It was a great way to keep her busy. The nurses and staff thought it was super cute.

When the academic struggles get to be too much for your child,

draw their spelling words, make a math collage, make up a story…

Sometimes it is better to pause than to pass.

Seizure Mama speaks to parents:

I am a former teacher. I knew how important it was for Rose to not fall behind in school.  I also knew how unimportant it was for Rose to fall behind in school.

While she was home bound in grades 3 and 4, her teachers and I refused to frustrate her by pushing the curriculum. One of her teachers said it was like trying to teach a blind person colors.

We worked to keep her moving forward in any way that worked. Art always worked. It was also a way to reassure all of us that Rose was still in there, through all the seizures and side effects.

They could have been terrible times, but we did not let them be terrible. Sometimes you have to let go of the agenda and go with the flow.

Seizure Mama/Flower Roberts

Epilepsy Blog Relay Post: June 23, 2019

 

 

My Hobby and My Mission

My hobby gives me so much joy.  It comes naturally to me. It’s easy.  It’s fun.

It is gardening.

I have chlorophyll in my blood. I come from a long line of plant people.

I love gardening and I love blogging about my garden.

My mission, on the other hand, is hard.  It causes me sorrow.

Twenty-four years of taking care of Rose while waiting for the next seizure or side effect was difficult.

Remembering these experiences is painful.

Writing about these struggles sends me back in the trenches.

Why do I do it?

Because I know how it feels to fight a losing battle; day after day after day…

I know how it is to feel unlucky, cursed and damned.

I can’t stand thinking that other mothers are doing it alone.

So I will stay the course.

Sending out a beam of light to a mama in her darkness.

Hang on Sister!  Flower is here.

Seizure Mama/Flower Roberts

The Technology Tumor

Long before the rest of the population was hooked up to technology,

Seizure Mama was wired.

My first two technology tumors were a beeper and bag phone.

For you young people, a bag phone back then weighed about thirteen pounds.

It was the size of an encyclopedia.

If there was an emergency with Rose,

the beeper went off with the number of the person who called.

I would unzip my “encyclopedia” and call them back.

I carried this phone in a giant purse or backpack everywhere I went.

When I want to whine about having to wear a little pack with my phone in it now,

all I have to do is think back to the beeper and bag phone days.

That shuts Mama right up.

Seizure Mama

Night Owl with a Day Job

We had our annual appointment with our hero neurologist yesterday.

Much of the appointment was spent discussing the importance of sleep.

Rose is a night owl.

She has a third-shift life while the rest of the world sleeps.

There is a kink in her schedule this summer.

She has a first-shift job.

Sleep deprivation is a seizure-provoker.

Rose cannot drive if she has another seizure.

A sleep-aid was prescribed.

Will she take it?

That’s up to Rose.

“Mama-Uber driver” would appreciate it.

Is Rose adult enough to make the best choice?

Old habits are hard to break.

I am hoping for wisdom and maturity.

We shall see.

Ugly Doll Rescue (Re-posted for Mother’s Day)

The first time this happened was in a giant toy store.

We looked down into a tub full of stuffed animals

to spy a small doll in a red checkered dress with messy blonde hair.

Maybe it was that messy blonde mop that made Rose relate to this doll.

She picked it up and turned it over.

The mouth was twisted and the eyebrows raised.

It was an alarming face. I remember thinking that it looked like it had had a stroke.

Maybe I said this. I do not remember.

The doll never went back in the tub. She went home with us.

Her name is Crystal.

The next one was not as alarming.

She had a cute little head band and outfit.  I think the facial expression was the manufacturer’s attempt at a yawn.

Her name is Dorothy Gale.

Then came the pouty-faced brunette with tear streaks down her face.

She was unhappy in the store. We must take her home, so she will quit crying.

Chevrolet is still crying.

The fourth was the tiniest one. She is was wearing a bonnet.

Her smile is just a little crooked.

She has eyes that look as though she just finished crying, but stopped because she spotted someone she loves. It melts your heart.

I do not remember her name. I am sure Rose could tell you.

There was one last attempt at a rescue.

It was in a toy store in a mall.

Rose picked up the doll off the shelf.  It was supposed to talk, but when Rose pushed on her tummy, a horrible, board-scratching shriek came out.

Rose dropped the demonic doll and ran out of the store.

That ended the mission of rescuing ugly dolls.

This post is in honor of Rose who just spent her first night in a college dorm.

GO SAVE THE WORLD ROSE!!!!!

SEIZURE MAMA

Original post January 2018; Re-posted May 2019.

 

 

 

Do Something

When you don’t know what to do,

do something.

I am in a quandary this morning.

Rose came home.

There are concerns about summer plans.

I am unsure of how to proceed with publishing.

One thing I am sure about is

I will keep busy today.

I will circle the gardens with a bucket and scissors.

If it rains I will move inside to do laundry and clean the shop.

If all else fails I will sort beads.

I know this sounds crazy.

It helps me to stay out of the worry maze.

If YOU can’t get to YOUR Happy Place, at least stay in a busy place.

Doing something helps me think.

I have a lot of thinking to do.

Seizure Mama/Flower

 

Story #35: Stop the Music

When Rose was in eighth grade band, the middle school band was invited to join the high school band to play during a football game. Rose sat with all the other trumpet players in the band section of the stadium.
Rose’s father and I sat in the adjacent section where we could keep an eye on her. We were concerned because Rose hated loud noise. We had instructed her to take out her tiny hearing aid while the band played. This hearing aid was red and the size of a kidney bean. It cost thousands of dollars and was not covered by insurance.
At some point during the first half, we noticed a disturbance where Rose was sitting. She was having a seizure. I rushed down to her side. The band director gave the other band members the okay to go take a break. This made it easier for the EMTs to get to us. Rose stayed unconscious for quite some time after the seizure. Her dad went to get the van and drive it up to the back of the stands.
It was about then that I noticed that Rose’s hearing aid was not in her ear. I searched around her. There was no little red bean. I went through her pockets. No bean. The EMTs joined in the search. We made quite a spectacle. Unconscious Rose, her mama, and a bunch of men in uniform scouring the empty stands.
The band members returned from their break. The band leader asked if I minded if they played some music. The music resumed. Rose aroused. A group of men helped haul Rose up the stadium steps to the van. As I followed them up the steps, a woman tapped me on the shoulder and asked “What were ya’ll lookin’ for down there?” She was curious about the lost item, not the unconscious girl. I guess asking about Rose would have been rude.
When we got Rose safely into the backseat of the van, I informed her dad that her tiny hearing aid was missing. I searched her pockets once more. Tucked down in the corner of her jacket pocket was that tiny expensive bean. I was so relieved and happy.
As we drove away from the school, Rose’s dad turned to me and asked, “Other than that, Mrs. Lincoln, how was the play?”

Seizure Mama speaks to parents:

It may be futile to try to keep your child’s seizures a secret. Rose’s condition was known to everyone at church, at school, and out in the community. We never tried to hide her epilepsy. There was no point in it. It went with us wherever we went, whether we liked it or not.