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

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/

 

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

 

 

 

 

 

Bad Busy

Beware of Bad Busy.

Bad Busy runs red lights and loses keys.

Bad Busy uses profanity prolifically.

Bad Busy has high blood pressure and low immunity.

Bad Busy ignores the signs.

Bad Busy drinks from the fire hose.

Bad things happen when Bad Busy’s back is turned.

Bad Busy needs to check on her pets and her people.

Bad Busy needs to slow down and look around.

All that cortisol will kill Bad Busy.

Stop Bad Busy!

Get rid of the Bad.

Get rid of the Busy.

Prioritize.

Do not apologize.

Pause and pray.

Today.

Everybody’s Mama

 

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