Category: seizures

An Enlightening Epilepsy Memoir

I have purchased seven more epilepsy books.

I will be sharing my thoughts on each after I read it.

The first is The Sacred Disease; My Life with Epilepsy by Kristin Seaborg, M.D.

I found this to be insightful and helpful.

The memoir follows Kristin’s life from a high fever and seizure as a toddler to adulthood.

I am amazed at her tenaciousness and fortitude.

Kristin finished medical school and gave birth to three children while struggling through trials of many failed medicines and a brain surgery.

She is honest about her feelings and frustrations throughout the whole process.

This book will be helpful to any person going through decades of uncontrolled epilepsy, especially young women of child-bearing age.

I am very grateful to Kristin Seaborg for sharing her story.

Seizure Mama

 

I have Seen that Elephant

I have seen that elephant.

The one that nobody wanted to acknowledge.

The one everyone is now talking about.

I saw it over two decades ago.

In my carport.

I will never forget it.

Its name is SUDEP.

I chased it away by beating on Rose’s back.

I thought she had aspirated vomit.

I threw her four-year-old little body across my knees

and beat on her back. It was a hard beating. I was afraid.

She was blue. She was not breathing. Was she dead?

Her seizure had marched across her whole body.

That seizure parade took over 45 minutes.

The elephant came at the end, instead of Santa or a firetruck.

When I laid her on the floor of my van to start CPR,

a deep breath entered Rose’s chest.

The elephant left us.

That was her first ever non-febrile seizure.

The elephant was Epilepsy’s welcoming committee.

Now everybody knows to look out for it.

Damn elephant!

Seizure Mama

Epilepsy Again

We thought we were done…but we were wrong.

Story 13:

Rose made it three years without a seizure. An EEG(electroencephalogram)was done. It was normal. She was weaned off of drug 3S during the summer. She grew taller, quicker, and smarter. We felt epilepsy was behind us. We believed the seizures were due to all those ear infections and fevers. Rose was growing and thriving. We were all relieved.
Rose started third grade without much worry. Everyone involved with her care knew her history. As a precaution, Rose’s medical information was shared with her new teacher. This young woman was very funny and enthusiastic. Rose’s classroom was near the office. Rose was happy.
We were all getting into our own grooves. Our lingering fear had loosened its hold on our family. I restarted my garden art business and began scheduling shows. My son was now in middle school leaving Rose at the elementary school without her big brother. No worries.
In mid- November, I had a two-day art show in a neighboring town about forty-five minutes from Rose’s school. Anytime I was away from Rose I wore a beeper and carried a bag phone. I can confidently say that her father and I, both at once, had not been this far from Rose since her diagnosis five years ago. Anytime I was away from her I wore a beeper and carried a bag phone.
The week of the show, Rose got another ear infection. She had hoped to go to her first sleepover at a friend’s house just across the road from our home. I was preparing for the show. Everyone was busy, too busy.
We kept Rose out of school on Thursday to recuperate and rest. She seemed to feel better. Friday morning was frantic. I gave Rose some over-the-counter NSAIDs(non-steroidal anti-inflammatory drug) and her antibiotics. I also sprayed her nose with a sinus spray as her ear specialist had recommended. We thought we had covered all the bases,but gut was still screaming. This was too much at once; the two-day show, the sleepover and especially being far from Rose.
My husband and I delivered our two children to their separate schools. Then we headed to the town of the art show in separate vehicles. He was to help me unload my heavy pieces into my booth and immediately return home. As we were unloading my garden art, my beeper went off. I looked at the tiny screen. It displayed the number of Rose’s school with a 911 at the end. This was our agreed-upon signal to drop everything and run. I am so thankful we had this signal in place. I explained to the artists in the booth beside me that we had a medical emergency. They assured me that they would pile my art under the table and cover it. We jumped into our truck and my husband drove as I called the school.
Our friend in the office answered the phone. He said “It’s Rose. Get here quick.” I explained that we were headed up the interstate, but were forty minutes away. Our hazard lights were on and I was waving a white sheet of paper in the windshield. Still some people refused to pull over into the right lane. At one point we passed in the grass and lost a hubcap. The beeper kept going off. The calls kept coming: “What hospital do we take her to?” “How far away are you now?”

My one question was ”Is she still breathing?”

Seizure Mama speaks to parents:

Let’s play a different version of the terrible game we parents play, “Second Guess Yourself.” Only this time let’s change it from ‘What if I had…’ to “What if I had NOT…?”

Examining the events described above, what if I had NOT…

1. …let Rose’s teacher know that she had epilepsy.
2. …set up an alert system including beeper and phone. (This occurred before cell phones.)
3. …left an emergency bag in the office with emergency medications in it?

If I had chosen to hide Rose’s seizures to avoid the stigma, would she still be here?

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.

 

 

 

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.

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

 

Story #33: Bike Wreck in South Dakota

Our family took a three-week trip across the country to the Grand Tetons and Yellowstone National Park. Our son was in high school and Rose was in middle school. It was the perfect time to take such a trip. Our children were mature enough to handle the long hours on the road. I will always remember things about this trip that shaped our future. It really was a defining time for our family. There were obstacles. We handled them as a family.
We drove our truck and tent-camped most of the time. When we arrived at our first camping spot, Flagg Ranch, we got out of the truck to see the most vivid double rainbow I have ever seen. We thought we had lucked in to the perfect campsite. We had two tents, one for sleeping and the other for all our supplies. We did not enjoy a restful time here, however. First, it was hard to sleep due to a park ranger’s loud truck circling the campground all night on bear patrol. When a rain storm came during the second night, we realized that our prime site was a gully. Both tents filled up with water. We were forced to move camp in the dark during the rain. We spent most of the night in the laundry building drying our sleeping bags. Other campers doing late-night laundry let us use up the remaining time on their dryers. This was on my birthday. It was amazing. We were an invincible team.
We moved around quite a bit during this three-week-long trip. I kept hauling an especially heavy bag of Rose’s in and out of the truck. Finally, I asked her what was in there. “ My shoes” she replied. “ How many pairs of shoes did you bring?” I asked. “ seven” she said. “ Why on earth did you bring seven pairs of shoes?” I asked. Her response was “ You told me to.” While she was packing for the trip she asked how many pairs of shoes she should take, I replied “ several,” but Rose heard “ seven.” This was one of those times when we suspected that a hearing aid was in her future.
Our family toured around Yellowstone, the Grand Tetons, the Badlands and Devil’s Tower. The only health issue Rose had for most of the trip was hiccups. The hiccup spells would last for long periods of time. It was a side effect of one of her medications. Epilepsy did not show up until we got to South Dakota. We camped at Custer State Park after visiting Mount Rushmore. It was a lovely place, but nowhere near a hospital, or anything else.
Rose and her brother were riding bikes around the campground while my husband and I fixed supper. We saw our son speeding toward us alone and knew that Rose had just had a seizure.
(Pause here. We are in South Dakota, near nothing, letting our daughter with epilepsy ride her bike. Were we crazy? Were we foolhardy, negligent, stupid?  No. We were living our lives. Epilepsy is like a terrorist waiting to attack. You can’t hide from it. It will come when it comes. We refused to keep sitting around waiting for the next seizure. Been there, done that.)

We jumped in the truck and drove to Rose. We hauled her and her bike back to camp. We waited for her to come to. We were concerned about broken bones. She was wearing a helmet, so probably no concussion. She had gravel in her knees. I was scared to do anything until she regained consciousness.
When she came to, we assessed the damages. No broken bones. Then it was time to deal with those knees. This part of the story always gets Rose a little mad. We had to carefully pick gravel out of her knees and bandage them. It was a painful process. She was upset with us that we had not taken care of this task while she was unconscious.

Seizure Mama speaks to parents:

We could have stayed home and waited for the next seizure. We could have forbidden Rose to ride her bike. She could have sat around the campsite watching her brother whiz past. But this is our life. Our family needed adventure and joy. We were going to live our lives to the fullest despite our fears. In those three weeks of wonder, we had one seizure and a lot of hiccups. That could have happened at home, but instead we got to see a spectacular double rainbow, Old Faithful, Mount Rushmore, a grizzly bear, and thousands of bison.
Get out there. Pack this damn epilepsy and go. But leave those seven pairs of shoes at home.