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.

Your Present Our Past

I awoke thinking of you. You are on my mind.

My struggling mothers keep reminding me of our past.

You are where we were, that hard place, that dark tunnel.

Preparing for hospitals and tests. Trying new drugs.

Hoping with all your heart that this will stop the seizures.

You may be in different states and across an ocean, but we are right there.

Your messages take my breath and make me cry.

I feel your pain and know your angst.

I wish I could help. I have no advice. All journeys are unique.

Just know there is Another Mother who gets it.

Your present is our past.

My sincere hope is that all our futures are seizure free and worry free.

Seizure Mama/Flower Roberts

 

 

When IT Comes Back

I was reminded by one of my other mothers how I felt

when IT came back.

A seizure happens after a long seizure-free spell.

You are thinking that IT has finally left her alone.

It throws her down while you are not there.

She is injured, you are shaken.

At some point we have accepted that IT will be back.

We will not let it steal the time in between.

We will do what we want and be who we want

until IT returns.

Getting back up is the most important part.

IT will NOT keep her down.

Flower

Attached is the post I wrote when Rose had her first seizure while away at the university. I was sad and angry and scared…

https://seizuremamaandrose.org/2018/11/12/battle-ground/

 

Follow-up to last post…Revelations

I did not want to leave you hanging with the term “Charlie Foxtrot.”

Story 52: Revelations

My sister and I rushed into the Emergency Room to find our parents. We located them in one of the cramped curtained cubicles. My parents’ young neighbor had awaited our arrival. We thanked her as she slipped out. My mom was in the bed, and 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 when 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 help had been delayed. 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 calm her suffering. I peeked out of the curtain to see her stumbling to the restroom carrying a specimen cup.
That’s when I saw the policemen, a swarm of blue right outside my mama’s curtain. I knew we were in a big city, but did we need this 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 encircled the source of the sounds.It was a young man in ragged clothes with matted hair. One of the officers was talking calmly to him, almost cooing to him like one calming a scared, wild animal. The other officers’ faces showed concern for the desperate man. 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. Only a curtain stood 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 stranger who was at the end of his rope, broken and alone.
Those officers were heroes with heart. They formed a barrier between us and this chaos with compassion. When you are looking for angels in the 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 lucky I was. I am a slow learner, but I eventually figure it out.

Seizure Mama speaks to parents:

A complete stranger crashed one of my pity parties again. It had happened before in our favorite hospital as I was riding down the elevator with a mother who was taking her child to hospice, while I got to take Rose home. It has happened over and over again, but I keep forgetting these life lessons. That we are blessed with family and friends, insurance, and health care. The biggest blessing of all is that Rose has developed fierceness and strength. She will endure. This I know.

 

Wonderful Day: Terrible Night

This happened three years ago this week. Unfortunately, every bit is true.

Rose says it was the beginning of bad times for our family, but I know better. There were many unfortunate incidences before this. We just shielded our Rose from the trauma. This was actually when I began to realize I was not in charge. That has been a great comfort.

This story is near the end of our book. I consider the chapters that follow to be the best I have written. I guess I had to get really low for everything to come together in a Revelation. (Next story)

Story 51:  Two Down One Night

The day of college graduation finally arrived. Rose was super excited. She led the procession of over four hundred graduates. 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 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 strolled past. I knew hundreds of these students from either teaching at the middle school or at the college. 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, his sister and her husband, Rose’s- two cousins, and her brother. Rose’s other set of grandparents made it to the ceremony. 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 led 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 parading across the 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 the 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 drove to my house to pack a few things before heading to the hospital. As I was rushing around my room throwing clothes in a bag, 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 on the charger. 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. She called back minutes later to tell me 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 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 had run back up the street to the college to be with Rose. Her dad got on the phone and told me to head on to the hospital to take care of my mama. My sister drove that hour 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 to parents:

Yes, I was mad. I felt like God had pushed my mama down those steps while I was busy at Rose’s graduation. Then he lured me into a car with my sister and threw Rose down in the parking lot the minute my back was turned. My status as superhero had been sabotaged!

I was about to get another lesson about my not being in charge. I don’t know where I got the idea that I was a super-hero, but that role kept getting snatched away from me. Instead I would get stuck being a helpless observer, on the sidelines watching life go on with no help from me. My mama had fallen down. I wasn’t there to save her. My Rose had just had a seizure. I wasn’t there to help her either. How dare God take the wheel of my car? Who did he think he was dealing with?

Does this sound like the rant of a grown woman? How about a crazy woman? Let the anger out. Then take a deep breath and do what’s within your power. No superpowers available, just you doing your best for your child.

 

 

Handling the Hyper-emotional Events

Whenever something bad happens, we dread how Rose will respond.

We wonder whether she will explode or implode.

There is no moderate middle ground emotionally.

Rose has to be made aware of sad events slowly and gently.

It’s like we must postpone our own sorrow and grief to navigate hers.

I am not sure why this is.

I know hyper-emotional reactions is part of TLE(temporal lobe epilepsy), but we never found her seizure source.

Is it her medications? The proneness toward depression? The smallness of her world making everything bigger?

I do not know the cause.

I only know that a big wave is coming.

I hope I can save my Rose and myself.

Mercy!

Flower

 

 

 

 

Trauma at the Board

PTSD is not remembering, it is reliving.

The mind takes one back to the event that caused the trauma.

The trigger time warps the person out of the present and back to the past without warning.

Instantly catapulted back to the painful event that caused the damage.

 

I was lecturing to an Anatomy and Physiology class at the local community college.

The subject was the cornea of the eyeball. I was describing its delicate nerve endings.

That is when I heard the scream.

I froze.

The scream belonged to a younger Rose.

 

Years before Rose had seized in the corner of the garden while planting flowers.

She fell face-first into the dirt with her eyes and mouth wide open.

Soil filled her mouth and eyes.

I tried to remove the dirt from her mouth. But what does one do with a dirty eyeball?

A scream erupted from Rose’s dirt-filled mouth.

A haunting, primal vocalization of deep pain that brings chills to the listener.

The sound of suffering and shock that a mother never wants to hear from her child.

Rose was rushed to an eye specialist for an eyewash and a liquid bandage on her eye.

 

As I stood at the board in front of a class full of students,

I heard this horrible scream again.

I stood silently with tears streaming down my face,  crying about the cornea.

There was a long and awkward pause as I pulled myself back together.

My precious, puzzled students patiently waited.

 

I could have continued my lecture on the cornea of the eye,

but there was something more important to teach these future nurses.

They needed to know about trauma and epilepsy.

So a story was shared about Rose and me and PTSD.

 

Mama

 

 

The Rose Museum

Whenever I miss Rose, I go to the Rose Museum.

Her entire life is archived into this small space(her room).

The wallpaper has not been changed.

The walls are covered with photographs and ribbons.

The shelves are stuffed full of photo albums, books and DVDs.

There are fairies everywhere.

The closet is packed with shoes, dresses, purses and toys.

Things go into the museum, but they never leave.

I am not allowed to straighten or clean.

I must dust delicately and sweep carefully.

Why the archives? She needs to remember.

Her memory cannot be trusted.

There were too many drugs and too many seizures.

The museum is her memory.

I do not need it to remember Rose, but Rose does.

Mama

http://a.co/7F3u4dr

 

A New Neurologist

Story 26 (September 2002)

After the toxicity scare, we no longer had confidence in neurologist #1. The doctor’s responses to our questions seemed short and unfocused. The drug and dose changes that she recommended seemed random. Our chart of drug changes was full of changes in dosages and seizures.
We asked for a second opinion. This first neurologist sent a letter of introduction for Rose to another neurologist in a different city. The letter described Rose’s condition and drug trials and requested a second look at Rose’s possible treatments for the future. I bet neurologist #1 was happy to pass hot-potato Rose off for some re-enforcements. I appreciated that a second specialist was going to have input into Rose’s care.
Our first visit with neurologist #2 took hours. He was very thorough and reassuring. He wanted to nail down the type and source of these seizures. He felt that Rose had been prescribed too many drugs on too small doses to rule them out as an effective treatment. He wanted Rose in an Epilepsy Monitoring Unit(EMU) to get a video-EEG. He said he felt we had been yawing around the pond of treatment choices.
This was a relief for us. We felt the same way. I was like Rose had been part of a badly designed experiment with too many variables. We were now going to get some hard data we could use to get better results. We finally felt hopeful.
We felt like this doctor heard what we were saying and understood what we were feeling. We didn’t just want to try something new. We wanted what we did next to be the right choice, not just a random change. We needed all the cards to be put on the table. It was time. Rose needed to learn and grow, not fall and fail.

Seizure Mama speaks to parents:

No one doctor knows everything. Each has his/her own training and experiences. It is always good to get a second opinion. Do not be afraid to ask for one. It may be just what you need to get a better result. Your current, struggling physician may appreciate your nicely worded, respectful request.
Do not, however, bounce from one specialist to the next in hopes of finding a quick fix. Patience is needed when trying out drugs and doctors. Do not secretly sneak around because each physician needs to see all your child’s records to make informed decisions and avoid repeating failed treatments.
I would also advise getting a second opinion for any surgical procedure. Even though installing a VNS(vagus nerve stimulator) may be a simple procedure, the device is permanent. You are making decisions for your child. Do it carefully and wisely. Get as much input as is reasonable.

An Inspiring Memoir

If you feel your epilepsy is holding you back, you may need a dose of Jon Sadler.

I was amazed by his tenacious nature over and over again.

He became an engineer and then earned a masters in counseling.

He sailed boats alone and hiked the Grand Canyon.

He was a scout leader for his sons’ troop.

He kept going through seizures and surgery.

This book will be a confidence booster for any adult with epilepsy.

Jon Sadler shares his amazing history in Sailing Through the Storms of Seizures.

His “no excuses” attitude is catching.IMG_0032