Category: parents of children with seizures

Dear Parents

Introduction for Watching Rose Rise:

I wish I could claim that this is a “How to” manual for raising a child with epilepsy.  It is not.  This is the story of raising our daughter, Rose. We made many mistakes.  Our family did the best that we could despite our own fears and ignorance. We were never trained as parents, much less as medical specialist. Our job was to raise Rose, not to cure her. We found the best doctors and tried many medications, but treatment is not a cure. We did what parents do. We flew by the seat of our pants with our hearts wide open and breaking.

I do not recommend you follow this twisted trail of breadcrumbs that I have left here for you to read.  I only hope that you recognize your own struggles among these stories and realize that you are not alone. Someone else has been where you are now, as a terrified parent, and survived to tell the tale.

Just remember you do not get to be the superhero in your child’s story.

Yours is a supporting role.

You child is the star.

When they fall down, you help them up.

Eventually, they will not need your help to get back up.

Your job is to get them strong enough to rise alone.

The getting back up is the important part.

When they are strong enough, you can stand back with pride.

This is where we are now…

Watching Rose Rise

 

 

Writing this Book

I started writing this book for Rose when the seizures returned while she was in the third grade. I knew she would not remember everything that happened. I wanted her to know how brave she was and how hard we tried to take care of her.
Through the tough years, I put the pages away in a big envelope. I drew a heart on the front with “Dear Rose” written in the middle of it. She found this envelope years later while she was in high school. Rose left me a note on the envelope saying that I needed to finish this book.
I stopped and started hundreds of times. Writing was drudgery.  Remembering was painful.  I did not want to do it,  but  I felt compelled. I needed all this suffering to have some kind of meaning.   If not for us, then for someone else. I may never see the results. I told myself that would come in God’s time, not my time. So I kept trying to get it done.

One summer my sister talked me into going to a storytelling workshop with her. The famous storyteller was our former minister. So the science teacher sat among all the right-brained, creative folks for a week. We shared stories every day.

This was a turning point for me. I had been trying to write down every detail in order, when what I really needed to do was save the stories. I started from scratch, again. This last draft with just the stories.  I did not attempt to put them in order at first. All I wanted was to get them out of my brain and onto paper. I did not just write this for Rose. I also did it for me.

Carrying around all these events in my head and heart was too much.
Writing the stories was a catharsis. At first I cried through every one. Sometimes I was forced to walk away from this book for weeks or even months. I had to find a way to keep myself balanced. I learned to work on only one story per day. I limited my time at the computer. I forced myself out of the house. My gardening kept me positive. My bunnies kept me entertained.

When Rose left for college, I felt a certain urgency to finish. She had moved out and moved on. I could not let myself start anything new until I saw this book through. I wrote at least four mornings each week during the first year that she was away at the university. My family knew that when it was done, that I would want to publish it for other parents who are going through their own struggles with a child who has epilepsy. It was a lonely journey.  Fear never left us.

Rose feels it is important to stand up for those who “fall down.” This is her story. She wanted to share it.

Seizure Mama and Rose

The Jacksonian March

This is not the name of a military drill.

This term describes the progression of a focal seizure up the motor cortex of the brain.

The seizure slowly spreads along what I call the “motor strip.”

I do not need to look at a diagram to remember the order of its areas.

That is because Rose’s first big, thirty-minute seizure involved

a Jacksonian March.

I watched as the chin twitch turned into, blinking eyes.

Next,  her hands pivoted down at the wrist.

Then her little arms pulled in toward her chest.

Her torso began rhythmically writhing .

Her legs bent up toward her body.

She was in a tight knot.

Even her toes were curled up.

Then she started turning  blue, because she could not breathe.

The doctor on the phone instructed me to get Rose to a hospital, FAST.

I carried this knot of a girl to the car.

When I placed her in her seat, she vomited and went limp.

The Jacksonian March was over.

Rose was four years old at the time.

This was the dramatic beginning of our journey with epilepsy.

She is twenty-six now.

She is the strongest person I know.

I pity the fool that makes fun of a person having a seizure if Rose is around.

I just hope she lets them live!

Seizure Mama

https://www.epilepsy.com/release/2018/12/epilepsy-foundation-issues-statement-indiana-basketball-player-living-seizures?fbclid=IwAR38FYNbl6LRLxX19SBTZ10OzPg-HvO2y9SmfW_4emyd6nUnzac9wbSwU9c

Revelations

My sister and I rushed into the Emergency Room to find our parents. We located them in one of the cramped, curtained rooms. My parents’ young neighbor had awaited our arrival. We thanked her as she slipped out. My mom was in the bed, my dad was in the only chair. We did not share the fact that Rose’s graduation was followed by a seizure in the parking lot. We were all focused on what the doctor was saying about mama for a few minutes before the ruckus started on the outside of the curtain.
The first sounds were from a woman who was clearly miserable. She was loudly complaining about getting no help for her problems while a female doctor was calmly explaining why there had been delays. This conversation grew louder until the patient was screaming about pain and needing to pee. I sent up a prayer for this poor soul. Apparently her physician had not authorized the medications needed to end her suffering. I peeked out of the curtain to see her stumbling to the restroom with a specimen cup.
That’s when I saw the policemen. There was a swarm of blue right outside my mama’s curtain. I knew we were in a big city, but so much security? As I was pondering my question, I heard the saddest sound I have ever heard. It was a long, soulful howl from a person around the corner and out of my view. The hair on the back of my neck stood up. My heart felt heavy in my chest. What was wrong with this person? Then there was a scream and a crash. The blue swarm circled the source of the sounds. It was a young man in ragged clothes with matted hair. One of the officers was talking calmly to this desperate person. He was almost cooing to him.  It was like one calming a scared wild animal. The other officers were young men and women in uniform. Their faces showed concern for the source of the scream. They were letting him release his anguish while forming a barrier between him and the rest of the people in the Emergency Room.
I stood behind my daddy’s chair with my arms wrapped around him. There was only a curtain between us and this sad situation. I was fervently praying with tears rolling down my face. I was not afraid. I was not praying for my mama. I was not praying for my Rose. I was praying for this encircled stranger who was at the end of his rope, broken and alone.
Those officers, they were heroes. They  were forming a barrier between this crazed young man and the rest of us. When you are looking for angels in this world, you may not see their halos and wings. Instead, they may be wearing badges and uniforms.
So Seizure Mama’s pity party was abruptly ended by a look at real suffering. Once again, I was shown how blessed I was. I am a slow learner, but I eventually figure it out.

Two Down One Night

The day of Rose’s college graduation finally arrived. She was super excited. There were over four hundred graduates and she was leading the line. She looked glowing in her cap and gown with gold tassels and sash. She had worked hard for this day for six years. She had taken classes at the community college part-time and worked at a restaurant just down the street. This ceremony was a victory for all of us.
We arrived early so that we could save the entire front row for family and friends. I was there with my camera to get photos of Rose and her fellow students as they paraded past. I knew hundreds of these students. It was like a reunion for me. What a wonderful night for our family. My parents could not attend due to mobility issues, but my sister was there, along with Rose’s  dad, aunt, uncle, cousins, brother and her other set of grand parents. It was a big event for the whole family. One we thought we may never witness. But here we were watching our Rose. Smiling brightly as she lead the line of graduates to their seats. She looked so happy and beautiful.
The ceremony was really long, but I enjoyed watching many of my former students marching across stage. I felt like I was graduating, too. In a way I was. I would no longer be driving here every day and spending hours in the library, the science building and parking lots. Our time here was officially ending. Rose had a plan of what to do next, but I did not.
The ceremony ended. There were more photos and many hugs.  As we were all parting ways, my sister’s phone rang. Our parents’ neighbor called to tell us that our mother had fallen down some steps backwards. She was being transported by ambulance to a hospital. The neighbor was driving my dad to the Emergency Room. The hospital they were going to was over an hour’s drive from where we were. We decided not to share the news with Rose. We wanted her to have this special night without the worry.
My sister and I raced to her car.We stopped by my house to pack a few things before heading to the hospital. I was rushing around my room tossing clothes in a bag when my cell phone rang. The man on the line stated that he was with the Emergency Medical Services. He told me my daughter had fallen and gotten injured. “No.” I said, “My mother has fallen. We are on our way to the hospital now.” “No ma’am.” he replied “Your daughter has had a seizure and gotten hurt.” I collapsed on the bed screaming. My sister rushed into the room. I told the man to call my husband’s phone. I gave him the number. I hung up my phone only to hear another one start ringing in the other room. My husband had left his cell phone at home to finish charging. My phone rang again. It was Rose’s friend Carol trying to find anyone in Rose’s family. I gave her Rose’s brother’s number. Carol called back minutes later to tell me that Rose was fine now. I was hysterical. Lightning might as well have struck me. God PLEASE, I am not this strong! Two people I loved most needed me and I was apart from them both. There was nothing that I could do. Helpless and hysterical! The combo from hell.
My son called the house phone soon after.  He and his dad and run back up the street to the college to be with Rose. Her dad got on the phone and told me to go on and head to the hospital to take care of my mama. My sister drove that hour to the hospital as I rode in silence, wondering why life can’t just come at you in single file instead of a damn Charlie Foxtrot.

SEIZURE MAMA SPEAKS NOW

This is the last story I will post on Seizure Mama.

There are two more. The blog will not get those.

Rose will have to write the sequel to this book herself.
This mama is done.
I began with Rose in a “Hot Diaper ” and ended it with her in a cap and gown.

What’s next is up to Rose. I can’t wait to see where she goes.

We’re tough, real tough!

Rose’s Mama

Broken Jaw Birthday

Story #30 in the book.

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 zoomed 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 warm blankets and bigger pillows. I remember asking the nurse if she realized that there was a ‘Princess Patient’ in her care. Rose did not think my hysteria 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, despite her diva-ness. 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 Now

Rose’s jaw really was broken despite the x-ray results. This lead to TMJ (temporomandibular disorder) later. Our suspicions were confirmed weeks afterward 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 last experience with stitches. I knew they were being done haphazardly by a Physician’s Assistant. I joked that we would like thirteen stitches because that 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 appointment. The stitches were too big, too tight and too far apart. Thankfully the cut was on her arm, not her face. The wound did not heal properly and the scar has widened. It looks like a three-inch-long fish skeleton, minus the head and tail. This story will probably be near the end of this book. It’s hard to finish this thing when the stories keep on coming.

Mary and her Damn Lamb

Rose was in the hospital for about a week due to her newly found kidney stones.

I stayed with her most of the time, only going home to shower and do laundry.

Days spent in the hospital are trying, but the nights are torture.

I had to sleep in a malfunctioning recliner beside Rose’s bed.

It would barely remain stretched out if you kept your back straight and applied force against it.  If you shifted the wrong way during the night, it shot into the sitting position, giving one quite a rude awakening.

Another issue that prevented a good night’s sleep was the nurse parade that came in at random times to check the IV machine.  If Rose moved to pinch the line an alarm  would sound.

None of these irritations compared with Mary and her Damn Lamb.

Across the hall was a patient who was not supposed to get out of bed, so the bed alarm was turned on.  Every time he got up, the bed played the tune of the children’s nursery rhyme “Mary had a Little Lamb.” This loud music alerted the nurses that the patient was being non-compliant.

Rose’s room was on the pediatric floor of the hospital. This story might make you smile, but there is a sinister twist to this tale.

While trapped in the hospital for days, I would silently slither out of Rose’s room while she slept to see different scenery and search for snacks. During one of my sneaky forays, I heard the nurses discussing this patient across the hall.

He was not a child. The hospital had no room for him in the Psych ward. Until a space opened up for him upstairs, he was across the hall from my Rose.

So every time I would hear “Mary had a Little Lamb”, I would wake up and watch Rose’s door; prepared to catapult myself from my dysfunctional recliner to protect my baby from some psycho.

Sleepless SEIZURE MAMA

 

Halloween in the Hospital

Story # 25 : Halloween in the Hospital

On October 27th Rose started vomiting. It continued for hours despite applications of the anti-nausea gel to her forearm. I finally packed her up and headed to the pediatrician’s office. He did not seem as alarmed as I was. He asked what I thought should be the next course of action. I replied that the next time Rose vomited, we were going to the emergency room. I told him that I knew something was really wrong with her. I did not know how I knew, but my “mama gut” was screaming. This doctor had known us for years now. He knew Rose’s history and he knew I was not an alarmist. He decided to send her on to the hospital to be admitted.
We were quickly checked in to a room. The nurses tried to start an IV. They could not get a needle in because Rose was so dehydrated. The IV supervisor was called to get one started. It was at this point that I realized that Rose’s face looked wrong. Her lips were too big and her eyes looked sunken. This is why I felt panicked. Her face was deflated due to dehydration.
The vomiting continued. They asked Rose her pain level on a scale of 1 – 10. She calmly replied 8. The nurses were startled by her response. She had not mentioned being in pain. She remained stoic through all the poking, prodding and x-rays. The suspected culprit was an intestinal blockage. To everyone’s surprise, two kidney stones were spotted. One was blocking a ureter. It needed to be removed immediately. A local urologist was called to perform the surgery on Halloween Eve.
When Rose heard that she was going to miss Trick-or-treating, she broke down. This brave ten-year-old patient boo-hooed like a baby. The nurses felt so sorry for her that candy and gifts began to show up in her room. Folks at our church were alerted. A giant bag of assorted candy was collected from the Trick-or-Trunk event. She got more candy than ever.

Seizure Mama Speaks Now

First, I would like to say that you must trust your “mama gut” even when you do not consciously know why you are alarmed. That instinct is like your hard drive. Even though the information is not on your “screen of consciousness” you still get a vibe of alarm. Even though I was not trained enough to know the signs of dehydration, I still recognized that something was physically wrong with Rose.

I would like to add that the following Halloween, Rose dressed up like a witch and delivered packs of candy to the pediatric floor of that hospital. The nurses were thrilled. They, of course, got to share in the spoils. Rose remembered how sad she was to miss Halloween. She wanted to make sure that the kids stuck in the hospital did not feel left out. This is what the seeds of pain can do. They can grow into love and bloom with kindness. Just like my Rose.

Toxic with a Timer

Story # 22: Toxic with a Timer

Rose’s latest drug combination became a recipe for disaster. She was dizzy and nauseated. She was limp and barely moved or responded. She was silent. She was being poisoned.
We put her on the couch, so that we could all keep an eye on her. She was on three drugs. One was an extended release form. One drug must have amplified the affects of the other two. Her nausea and vomiting turned to dry heaves and bile. Seizures were clustering. We knew she was in danger.
We called the on-call neurologist at about 11PM. The conversation was difficult due to the doctor’s foreign accent. My husband and I were both on the line listening. We thought the doctor said to use the emergency drug if Rose had another seizure. Then we were to take her to the Emergency Room if she had a seizure after that. Was that really what the doctor said? Two more seizures and then the ER? Really?
The next morning Rose was very pale, weak and listless. She barely moved. We tried desperately to get her to eat and drink each time that she woke up. She was fading before our eyes. I called the doctor’s office to report her condition. I broke down as I explained that we felt she was being poisoned by these three anti-convulsant drugs and still seizing.
The wise nurse calmly told us to get a timer. She said to set it for twenty minutes. Every time it went off, we were to wake Rose up and make her sit up and sip some water. We set and re-set the timer all day long. For hours we watched her and waited for the bell to ring, over and over.
Hours later she began to improve. The poison was being diluted. Rose was re-hydrating. The color came back in her face. She was safe. No trip to the Emergency Room required.

SEIZURE MAMA SPEAKS NOW

We kept gel in the refrigerator to put on Rose’s arm for nausea. There were several times when her vomiting lead to seizures because she had thrown up her medication. We always sifted through her vomit if it occurred soon after a dose. I know this seems gross, but you need to know whether a dose needs to be replaced or not. Doubling a dose may be worse that missing a dose. You need to know.
This particular situation was the exact opposite. Rose was sick and seizing before throwing up. Her dosages were too high. The combination was too much. She was listless and unresponsive. I still distinctly remember this because I was so afraid.
Know your child’s dosages and drugs. If you do go to the Emergency Room, drawing blood levels may be an important piece of information for the doctors involved in the treatment.
We wrote down all dosages on a calendar and used a pill organizer. There was no guessing about the medications that were taken. We also recorded how the dosages affected her. This information was used to convince the neurologist that she needed a different drug or combo. Do not count on your memory. Write it down.

 

SEIZUREMAMA