Category: memoirs

The Book of Another Mother

I finished Tara Heaton’s book late last night. I have the habit of highlighting and scribbling notes in the margins as I read. Almost every page of LIFE MINUTES Igniting Joy from the Fire of Heartache has been marked with hearts, tears, omg’s or YES in the margins.

Tara has laid it bare. My heart hurt with empathy as she described the tumultuous journey through various treatments for her daughter, Caroline. Other mothers will recognize the names of these drugs, treatments and hospitals. She has been another mother who has left no stone unturned looking for answers.

She also beautifully documents the effects this epilepsy treatment quest has had on her other two children, her marriage, her career and her own well-being. Epilepsy is a medical odyssey for the whole family, not just the patient. Tara shares how her family and friends have played important roles in the quest for Caroline’s cure.

I find this book an affirmation to my own story and struggles and also inspiration to my continued quest to find a cure for Rose’s seizures.

Tara is a fearless advocate in the continued search for the best care for our precious epilepsy patients. Her flame burns bright.

Bravo Mama Tara!

Seizure Mama FLOW

Another Writing Mother

A miraculous thing happened at the ‘ Wild Awakenings’  writing workshop with Cheryl Strayed which I attended this weekend in the mountains of North Carolina. I consider my getting myself to attend as a miracle, but that’s not it.

In a huge hall of over three hundred other writers, a lovely woman wearing flowing Beatles pants sat down in the seat beside me. She had on fingerless gloves with crocheted pink flowers on them. I instantly knew this was my kind of person.

She asked what writing projects I was involved in. I answered that I had written a book about my daughter’s epilepsy. She replied that she had just released a book about her daughter’s epilepsy. She asked how old my daughter is. I replied 32. She gasped and said her daughter is also 32.

(Pause here to do the math.)

This was a miracle. Of course we hugged. Of course I cried. We exchanged books.

The Universe sends us what we need just when we need it.

SEIZURE MAMAS

Seizure Mama and Cheryl Strayed

Our Haunted House

We have all done our best.

We respect each other’s space.

No one is in charge of anyone else.

Cohabitation. Coexistence.

We thought we were doing well, her dad and I.

But Rose says she can’t come home.

This house is full of ghosts.

Fear ghosts, seizure ghosts, sickness ghosts, struggle ghosts,

stains of sadness in every room, the carport, the yard…

We are not allowed to change anything in her room/The Rose Museum,

but she says can’t come back here.

I hate to admit this, but I get it.

The pain is still here, lurking but fading

in this haunted house.

Flower

https://seizuremamaandrose.org/2020/02/21/the-rose-museum/

 

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

 

 

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…

Female Fights for an Accurate Diagnosis

I appreciated this honest memoir Brain Storms: An Electrifying Journey by Kate Recore.

She did a great job of conveying her years of struggling with epilepsy.

Unfortunately she also had struggles with bad doctors also.

She was misdiagnosed by a male neurologist who diagnoses her issues as mental and emotional NOT physical.

He was forced to change this opinion after a second EEG confirmed seizures.

Insurance HMO’s did not help in Kate’s quest for help.

I got the sense of her maturing as the book chronicles her young adult years of trying to become independent.

She fells that sharing her story will help other young women dealing with sexist or paternalistic physicians.

I am super proud of Katie Scarlett Taylor for blazing a trail for young ladies like my Rose.

Thank you Kate Recore!

 

 

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