Epilepsy Foundation 24/7 Help Line

https://www.epilepsy.com/living-epilepsy/247-helpline

I saved this link so that I could find it again.

Our newest issue is that our insurance wants to “encourage” switching to generic forms of Rose’s medications.

Generics are NOT the same as name brand drugs.

We have experienced two accidental switches in our twenty-three years, both times the results were terrible.

So here comes our next battle.  Not seizures…Insurance.

Seizure Mama

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

Another Mother

Rose and I had a lot of help during these years of struggle. Rose’s dad kept working through it all while I quit teaching part-time at the local college, then closed down my garden art business, later left my middle school job and lastly kissed that community college good-by for a second time. Rose’s dad has been the steadfast supporter, while I have fluctuated between fearless caregiver and emotional wreck. My husband is still working after thirty-eight years to keep our insurance. Hang in there Honey!

Rose’s big brother missed having a care-free childhood because he had to be strong and serious. I still send him silly photos on his phone to make sure he laughs once in a while. He is like his daddy. He will carry the load and stand straight up doing it. He has been there for Rose over and over again. Playing the role of goofy protector to keep her safe and laughing. I hope he surrounds himself with fun and joy as a man.
Our whole family has traveled with us on this journey; two aunts, four grandparents, a beloved uncle B and two cousins. Coming to parties and throwing parties. Showing up wherever we were with food and gifts. Calling to check on Rose. Taking her shopping.  Playing games with her. Doing what families do.
Our church has been a blessing through it all. It is like our second home. We went there during the terrible times when we did not go anywhere else. Rose got to be around familiar folks. The other children knew about her seizures. These families supported us through the tough times. Our church friends brought in meals for our family and toys, games and coloring books for Rose. Three older gentlemen made it a point to call us every couple of weeks. “How is our girl?” they would ask. Ronnie is still around. Phillip and Blake are no longer living. Rose loved them dearly and took each one’s passing especially hard.
Rose has some friends that have stayed loyal through the years. Leigh Ann, Peter, Ingrid, Aly, Erick and Christina are still her support team. These kids are like family. We are so grateful to them for helping us raise Rose. These peers were especially important through the teen years when Rose’s parents were so ignorant.

All these people gave all kinds of support, but what I really needed was another mother. I needed a mother who had raised a child with epilepsy to tell me how the hell I was going to get us through this. I did not want that other mother to be going through her journey along with me. I needed a mentor. Someone who had lived through all the trials and tribulations and had acquired the skills to stay afloat. Someone with stupid stories and anecdotes. I just needed one other mother to reassure me that we could come out the other side of this terrible tunnel. I needed to see the light.
My forays on the Internet got me drug names and possible treatments. I did not understand most of what I read. I had no medical training. I wasn’t a chemist. I did not need all that jargon. What I really needed was another mother.
That is why started the blog, Seizure Mama and Rose. I was determined to be that other mother. So that some scared mama who was going through that tunnel in real-time could glimpse what life might be like at the other end.

When Rose calls home from the university,  I tell her where our views have been.  I say, “Another mother has found us.”

Hang on “Another Mother”, Rose and I are right here.

SEIZURE MAMA

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.