Category: Mama trauma

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

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

 

 

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.

 

 

Parameters

I want to send a message straight from my “mama heart” to yours.

It’s about knowing what you can do and what you cannot do.

There are better tests, treatments and therapies now. Keep searching for the right ones.

Everyone’s epilepsy is different.  You have access to more information and support.

You cannot do everything. You cannot fix everything. You cannot be everything.

Guilt is toxic. Depression is damaging. Exhaustion is depleting.

Trust yourself to do your best. That is all you can do.

Be kind to your frazzled self.

Look for tiny bits of joy everywhere.

Pause to ponder and wonder.

Protect yourself and rest.

Your fragile child needs you.

Take care of you, too.

I know your pain.

Flower

 

 

 

 

 

Tethered Together

A tether is a connection of a mobile thing to an immobile thing

to limit the movement of the movable part of the pair.

The irony of this description is not lost on me.

Rose was prevented from flying away and I was immobile.

I am the heavy, the anchor, the immovable.

Who wants a heavy, immovable mother?

Who wants to be heavy and immovable?

Maybe I have been looking at this the wrong way.

I want to move, too. I want to fly, too.

I am still stationary long after my Rose bird has flown.

I am still here holding down an empty fort.

I am still here.

Still tethered by fear and habit and age.

I need to rise up. I need to look up.

I need to be free from the hanging, empty tether.

Free to be me.

Free

 

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 Missing Stories

The folks who know us best will notice omissions in our book.

There are missing stories.

I see no point in sharing them with our fragile and frazzled audience.

Some are painful while others are pointless.

There are stories of folks doing the wrong thing or nothing.

Why should I shame people for trying to do what they think they can do

or not trying to do what they know they cannot do.

There is so much forgiveness in my heart that I even have some left over for myself.

I am not a doctor, nurse or pharmacist. I am only a mother.

My job was to be there and care.

That’s what I did.

So friends, if you wonder why those events that you witnesssed  have been omitted from our memoir, keep in mind…

the point of our book is to help not to harm.

My ‘Other Mothers’ need stories they can learn from.

We want to stand on the edge of the crazy cliff with them,

not shove them over it.

That’s why we are here.  To stand together.

Seizure Mama and Rose

 

What do you Need?

As I am putting the finishing touches on our book,

I keep telling myself to “remember my audience.”

I want our book to help parents of children with epilepsy.

I have honestly documented events in our lives.

I have added a “Seizure Mama Speaks to Parents” after each story.

A letter to parents begins the book.

An epilogue tells about writing the book and blog.

The last chapter is about letting Rose go it alone.

That was always the goal.

What else do you need parents?

I am thankful to have this blog,

so I do not TOTALLY feel this is our ONE SHOT.

I want to do this right.

HELP ME HELP YOU.

I need honesty from my “OTHER MOTHERS.”

Seizure Mama/Flower Roberts

Image by our fabulous publisher JAHBookdesign.  Just the beginning…

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