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

 

 

Story #8: Preschool for Two

After the series of seizures in the hospital, drug 2D was weaned down and replaced with drug 3S. This new drug was sprinkled onto pudding or peanut butter. The new set of side effects to watch for were hair loss, increased appetite, and learning issues. Well, at least her gums were safe now!
Rose’s birthday is in October so she was either going to be older than her classmates or much younger. Since she was small and had health issues, we had chosen to keep her in preschool an extra year before starting public school. We were glad that we had done this in view of all these ear infections, drug transitions, and seizures. I wore a beeper on my belt at this point. I would drop her off at preschool and go walk at a park down the road or visit grocery store located just across the highway. I was never more than two minutes away. Rose and I were tethered together out of my fear. These Mother’s Morning Out days of preschool were our only break from each other.
Our family loved this preschool. We knew all the teachers well since Rose’s older brother had attended there a few years earlier. The one person on the staff who was not my friend at the time was the director. She was gruff and blunt. She said what she thought without any sweet Southern filter.
When Ms. B heard about Rose’s surgery and the following series of seizures, she phoned us. She informed us that the church preschool could not be responsible for handling medical emergencies. The teachers were not trained for these. Rose was a liability risk. This was hurtful to us, but I also understood it. Rose’s teachers truly loved her and if anything happened to her on their watch, they would have been devastated. By law, public schools have to accommodate students with special needs, but churches do not.
Our options were to pull Rose out of her preschool or have me stay in the building every day while she was there. We were not going to tell Rose at the tender age of five that she was not welcome back into her beloved preschool because of her seizures. Instead I simply stayed at the church every day. The staff knew that I was upstairs in an empty room near the director’s office. I was only a shout away if needed. I read books and studied. Other mothers and teachers dropped by for visits. The director came by to check on me. I began helping her out with needed tasks. Then I cataloged all the children’s books and repaired them. I even substituted when other teachers were sick.
The experience was good for all involved. Rose got to stay in school and her teachers did not need to worry because I was close by. The director and I became good friends.
When Ms. B would drop by to check on me everyday, sometimes I shared my worries. Once when I was obsessing about an upcoming event, she said, “Don’t cross the Fox until you cross the Fox.” She then went on to share that this was some advice from Abraham Lincoln. Apparently there was a Fox River. As folks traveled toward the river they worried about whether the river was up too high or moving too fast to get across. Lincoln was reminding folks to wait and “cross that bridge when you get there.”
Once Ms. B caught me crying. I was overwhelmed by all the hoops we were having to jump through to get help for Rose. She looked into my eyes and asked, “How do you eat an elephant?”and then answered, “One mouthful at a time.”
Seizure Mama speaks to parents:

Forcing the responsibility for your child’s safety onto others is not fair to them or to your child. If your child’s seizures can be dangerous or even life-threatening, you want a willing and competent person in charge of his/her care. You must be an advocate and an assistant. People fear what they do not understand. You must educate the people around your child about epilepsy. Yes, there is a stigma. There will be some shunning. But if you confidently share information with others, there will be no surprise,or public revelation to dread. We were always open about Rose’s epilepsy. This is so much better that trying to guard it like a secret. Be brave and honest. Would you hide your child’s asthma or diabetes? Of course not. Then do not hide this condition. There should be no shame. If your child senses your shame, he/she will feel ashamed of it,too. Do not hand them a handicap.

Be Brave?

Rose had seizures everywhere.

On these many occasions, I plaster a smile on my face and look folks in the eye as they glance and walk by.

Nothing unusual about a grown woman sitting on the floor/ground beside an unconscious little girl.

Rose had a particularly dramatic series in an undisclosed, public location.

As I was sitting on the floor in a hallway, a woman with healthy children walked by, patted me on the shoulder and said “Be brave” and walked away.

I am on the floor. My child is unconscious, again.

Be brave?

Do you tell a person with cancer to be brave?

Do you pat the shoulder of someone being wheeled in to open-heart surgery and whisper “Be brave”?

What choice do we have?

Seizure.  Stop the clock.  Then we wait.

Seizures stopped ballgames, picnics, award ceremonies, bible school, band practice, ball practice, dinners in restaurants.

Stop. Wait. Hurt? Get up.

Stop. Wait. Hurt? Get up.

I am tired of being brave.

How about sitting on the floor with me?

Wait with me.  Down here on the floor.

Anchored to this spot until it’s over.

Until she comes back to me.

Stay and help us up.

If you really care, don’t walk away,

leaving us to be brave,

down here,

alone,

afraid.

SEIZUREMAMA