The Scars

The wounds will heal, but there will be scars. Scars outside and scars inside.

Your job is scar management.

This may include applying Mederma or ScarAway gel.

There may be ice packs and wrapping and bandage changes.

It’s the scars inside that need the most attention.

Sometimes children think they cause what happens. Adults may fall into this trap, too.

Whether you believe it is God or fate or bad luck or random events does not really matter.

The longer you live the more you will see bad things happening to good people.

Not all of the bad is random, sometimes mistakes are made to bring on hardship.

But many times the disease, accident or abuse is random and does NOT involve blame.

If you model the blame paradigm for other things, your child may follow suit.

They need to know they are not the cause of their seizures. No blame involved.

Nor should they be made to feel like a victim of epilepsy. This brings on neediness .

This disease will leave some scars. Your job is to minimize these not encourage them.

If you have trouble with this, replace epilepsy with another disease.

Diabetes, asthma, scoliosis, cystic fibrosis, Down’s syndrome…

Do these diseases involve blame? Are these patients victims?

I guess since epilepsy comes and goes we see it differently.

It comes and leaves scars. Then goes away for some healing time.

Use that time between to address both types of scars.

Mama

Broken Jaw Birthday

Chapter 36 from Seizure Mama and Rose by Flower Roberts

I was called over the intercom in my classroom on Rose’s birthday. The message was “Get to the high school; she’s in the gym.” I rushed to my car and drove across the street. I cried on the way. Really? On her birthday? Can we not have this special day without a seizure?
I arrived to find Rose on the hard wooden gym floor with a stranger’s sweatshirt under her head. It was covered in blood. The other students looked sad and afraid. I tried to put on my brave mama face, but I am sure my red eyes told the truth.
I forget how I got her to the car. I am sure it involved a rolling chair and handing my car keys to someone I barely knew to drive my car to the curb. Trauma does some memory editing. My only memory is of her bloody face and swollen jaw.
I drove Rose to the Emergency Room. This was one of those times when I put on a comedy routine in the hospital. Rose was my straight-man sidekick. She was a real diva. She demanded more warm blankets and bigger pillows. She wanted ginger ale with crushed ice. I remember laughing at all Rose’s complaints and demands. I joked with the nurse about having a ‘Princess Patient’ in her care. Rose did not think my joking was funny. I think the nurse was afraid of us both.
Her jaw was x-rayed. The results were said to show no break, but you could look at her and tell that was not true. No point in arguing with an x-ray. After the x-ray came the stitches.
Before the work began, there were those awful numbing shots. Poor Rose handled them like a champ. Her chin had a inch-long split just underneath her lower jaw, right in the middle. An amazing doctor made tiny, perfect stitches as though he were quilting. I was amazed at his skill and precision. I told Rose that I wished she could watch him working. She would have been fascinated.
So this is how Rose spent her birthday that year, getting x-rays and stitches. No party, no pity.

Seizure Mama speaks to parents:

Rose’s jaw really was broken despite the x-ray results. This led to TMJ(temporo- mandibular joint syndrome)afterward. Our suspicions were confirmed weeks later by her orthodontist. She also had crushing of some roots of teeth in her lower jaw.
I want to point out how important it is to pay attention to everything that goes on in a hospital, even if you are squeamish. I watched every stitch by this doctor. I appreciated his skill and carefulness. He knew that he was working on a young girl’s face. He wanted to make sure the scar would be minimal.
This was not the case with Rose’s recent experience with stitches after an accident at work involving her arm and a box cutter. I knew the stitches were being done haphazardly by a Physician’s Assistant. I wish I had taken a picture of this mess with my phone.
We joked that Rose would like thirteen stitches because thirteen was Rose’s lucky number. She should have gotten thirteen tiny stitches instead of the eight big ones she received. This injury was particularly bad. I really did feel faint as I watched, but faked my way through, again.
The stitch-witchery was confirmed by a doctor who worked in dermatology during the follow-up examination. The stitches were too big, too tight and too far apart. Thankfully the cut was on her arm, not her face. The wound never healed properly and the scar has widened. It looks like a three-inch-long fish skeleton, minus the head and tail. This story may be included near the end of this book. It’s hard to finish this thing when the stories keep on coming.

Getting It Out

There is something about trauma that sticks with you mentally, emotionally and even physically. It is hard to shake off the baddest of the bad.

This is supposed to help living things survive, but sometimes it is more like poison to people. The memory is too heavy. It gets in the way.

Some folks can talk it out, but that does not work for me. Children draw their traumas because they do not yet have the vocabulary to fully express what they are feeling. I have to write mine out. I write it and re-write it, until it is on paper correctly. Then I can let it go.

Find your own way to GET IT OUT of you. So you can move on with your life. You do not need to lug the baggage around with you. I needed to keep these memories somewhere safe, so I could get to them when I wanted to without constantly carrying them.

I wrote Seizure Mama and Rose three times. It’s original title was Watching Rose Rise, but the search engines needed seizure and epilepsy in the title. Our blog was called Seizure Mama and Rose so we used that name. It think that was wise. More mamas can easily find us.

The last draft of the book was the real catharsis for me. It broke down our traumatic events into stories. Each was a circle of “What happened? What did we learn from it?”

Those pieces were each usable little bits to share instead of a loooooooong and boring memoir. I can easily remember each event by its title. It helped me sort out the trauma and emotions. My whole family was in on picking the 50+ stories. Events that were too sad or not useful to others were omitted. We had our audience in mind at that point.

You do not have to share every bit of your trauma. Just get it out of your head and put it somewhere safe. Use a special journal or sketch book. I still carry paper everywhere I go. I used to have “Journal Emergencies” when I would have to go out to find something to write in. Once I ended up in a kitchen store with a recipe book.

From my heart to yours. Purge the past and move forward. Lighten your load.

Mama

Stop the Music

Chapter 35 of Seizure Mama and Rose by Flower Roberts

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.

Confessions of a Scared Mama

The seizure in the band room was one of the ones that I cannot forget. It is still clear in my mind. I guess extreme fear does that to the brain. There were so many factors out of my control.

I could barely contain my panic. Rose was in danger of getting injured by her surroundings during the seizure. Then her post-ictal rage endangered us both. She seemed blind and did not recognize my voice. I know she must have been terrified.

While this was going on, I knew that all the band students were waiting outside the door. It was the end of the day. They needed to put away their instruments. They needed to catch buses and rides home. Time was running out. I did not want Rose’s fellow students to see her acting crazy.

I was thankful for the two teachers who stayed with us. Rose came to herself just in the nick of time. She sat up quietly as the band students flowed in and out quickly.

Rose’s father and brother arrived. Her neurologist was called. A new medication plan was made.

I still feel that panic in my throat and gut when I recall this particular event. An enemy within is hard to fight. That total lack of control is haunting.

Do not feel sorry for us. Think how lucky we were to have the support of others and know that we were always close to each other. It was tough being together so much, but being apart when Rose needs me has been much worse. (Her university is 3 hours away.)

We have learned to live with a level of uncertainty that most never experience.

We did. You can, too.

Mama

Down in the Bandroom

Chapter 34 of Seizure Mama and Rose by Flower Roberts

When Rose started to middle school, Mama went, too. There was an eighth grade science teacher opening which I applied for and got. There was a collective sigh of relief from all of our family and friends. The middle school was too far away from our house. I could not get there fast enough if there was an emergency. The route there was all two lane roads. What if there was a tractor, a train, a wreck…?
So Rose’s mama went to middle school. It was a good thing I did. There were sicknesses and seizures that had to be dealt with. The entire staff knew that Rose’s mama was only an intercom call away. I would hear my name followed by “Get to the gym.” or “Go the nurse’s office.” I would take a deep breath and run toward Rose as someone met me in the hallway heading toward my classroom to watch my students during my absence.
Adjacent to my classroom, I had a storage room for science equipment. We kept a fold-out cot with pillows and blankets in it for Rose to sleep off her seizures after being rolled to my room in the closest available rolling chair. It was a comfort to Rose and me that I could peek through my back door and check on her without missing a beat teaching my students.
This is how we handled her emergencies during those years. We were still searching for the perfect combination of medications. She had some learning issues and hearing issues. Then there were several surgeries. Rose needed support. I was the “mama in residence” again, there to make sure she was taken care of.
On a particularly hectic Friday, I was called over the intercom to the band room. There was a band concert. Rose played the trumpet in it. I ran to the band room to find her unconscious on the tiered floor among scattered chairs and music stands.
(Please pause here to envision this setting. A stair step type floor plan, rows of chairs on each level and tall, black, metal music stands everywhere. Lord, could we not have this seizure somewhere else?)
Two other staff members stayed with us in the band room until Rose woke up. Instead of her normally docile self, she woke up swinging. I could tell she did not know where she was. Sometimes she is blind after a seizure. I kept trying to talk calmly to her, but it was as though she did not recognize my voice. I tried not to panic as several music stands were knocked down, which caused more to fall. There was a domino-effect. More crashed to the floor. It took quite a while to get Rose calmed down. The band students were waiting outside the door. They needed to put their instruments back in their cases. It was time for school to let out. They needed to come in and get ready to go home.
Rose’s dad and brother came to help us. I made a call to the our neurologist. Drug 8K dosages would be increased. No one lost her head. The show must go on.

Seizure Mama speaks to parents:

I was very fortunate to get to work at Rose’s school. It got us through those years. They were not easy for any of us. I was a trained high school biology teacher with community college experience. I would not have chosen to teach middle school. I loved my students and my peers, but the stress slowly took its toll on my health. I knew this was not going to end well, but I had to make it through seven years.
The high school was right across the road from the middle school. If I did not get a job there when Rose went to high school, I would just remain the sentry across the street, only a phone call away and a quick drive across the road. The drive over would be followed by a panicked run to a designated location. I could endure seven years in eighth grade to save Rose. I could do that. I thought…
So what does this mean to you? There will be many sacrifices made for your fragile child. Do not let your own health be one of them. I lived through my time in middle school, but damage was done. I am better now, but there were times when I was truly terrified for my own well-being. I am very protective of myself now. I have to survive Rose’s seizures, too. Rose needed me whether she liked it or not. We were tethered together by her epilepsy. If one of us went down, we both went down.
Take care of yourself, too. United we stand.

Feel the Fear and do it Anyway

Epilepsy has been in our lives for almost 30 years. Rose turns 30 this fall.

Although her official diagnosis was made at age four, there were signs earlier.

There were years when the fear was in charge. I still tell myself that was necessary at the time. It does not really matter now.

I am glad that we fought that fear. We did not let it put our baby in a corner.

Rose deserves a full life. So do you and your child.

The damn seizures will come when they come. Do not sit around waiting for them.

Go out and live a happy life between them.

Everybody’s Mama

Wreck? Where?

Chapter 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 hiccups 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.

A Great Book for Parents of Children with Epilepsy

Even if you are not currently considering the Atkins for Seizures diet for your child, you will find this book insightful. I felt like a friend was recounting issues of parenthood as they sat beside me. I do not personally know a parent who has gone through what we have with Rose, so this book was a comfort. I think any parent can glean some valuable wisdom from the authors words.

Diet for Seizures: One Child’s Journey by Michael J Koski details the events leading up to and going through his daughter being part of a study on the modified Atkins diet by Johns Hopkins. Brooklyn was seven when her food was drastically altered to reach ketosis. I felt her mother’s pain at having to prepare special food for her young daughter and cook for a husband and another child while still breast feeding a baby. Sounds stressful and overwhelming.

The book was published in 2013. Our family was deep in the struggles with seizures at that point. Having this to read would have made me feel less lonely as Rose’s mother. As a high schooler, Rose met with a dietitian about going on a similar program, but chose not to try it.

I would still have appreciated reading Michael J. Koski’s stories about seizures and medical events and his concerns as a parent about Brooklyn’s emotional well-being. Mr. Koski gives an honest view of the worries parents have when a child has to be treated differently because of a medical condition. I admire how he and his wife tried to help Brooklyn not feel singled out because of her “diet.”

The book also contains many links to resources that may be helpful to you. There are stories about other folks dealing with epilepsy at the back of the book.

I underlined and circled something on almost every page of my copy. I wrote “YEP!” in the margins quite a bit. I am grateful to this family for taking their time to share their experience to help others.

This book gets a 10!

Hooray Brooklyn Koski

Flower Roberts

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