We have all done our best.
We respect each other’s space.
No one is in charge of anyone else.
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.
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.
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 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
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…
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!
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.
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.
I have been reading another insightful memoir written by a person with epilepsy.
Each one I read brings back memories of our struggles.
Each also reminds me that this is not over for us.
Epilepsy rarely vanishes.
It does, however, hide for long periods.
Rose does not want to know this.
Neither do I.
So we are living like it is gone while we can.
But when it returns,
we will need you.
It will be hard trying to fit our big lives
back into the confined space of seizures.
While she was home for fall break, she dropped her shampoo in the shower.
It was her habit to say something to let me know she was okay.
She did not say anything. I made myself stay in my bed and listen.
Fear is never far away.
We will need you.
(I almost entitled this “She Will Need You”)
We are still tethered together.
Mother and daughter.
Epilepsy and fear.
Story 24: June 2002
Of course epilepsy came on vacation with us. Rose had three seizures during our week at the beach. Two occurred while she was swimming in the pool. She always wore a life jacket in the water and someone stayed an arm’s-length away. I knew it was risky to let her swim, but she loved it so much. We live on a lake so our family and friends swam a lot. We could not forbid Rose from participating in something we all enjoyed together. If she seized in the water, we just held her until the seizure ended and carried her out to a lawn chair to sleep afterward. We suspected extreme temperature changes triggered seizures, and so we tried to avoid the water in the mornings when it was cooler. We also covered Rose with a towel when she got out so she would not get chilled.
Rose also loved the ocean,but swimming with her among the waves made me a complete wreck. I was afraid we would both go under if she seized in the ocean. She was content to go in for only a few minutes and then play in the tidal pools with her shovel searching for little fish and shells, and building sand sculptures.
One day Rose and I had just walked down onto the beach and picked our spot on the edge of a tidal pool. I set down our bags and towels just as Rose fell face first into the sand. I placed her on her side to seize, as I tried to wipe off some of the sand that stuck to her face. A nice lady nearby offered me a bottle of water to wash her off. The seizure soon ended, but Rose was covered in wet, sticky sand. I swaddled her in a towel and sat close beside her to wait out the thirty minutes or so it would take before she woke up. My family could see us from the porch of the condominium, so I knew help would arrive when someone spotted Rose lying still under a towel.
While I was sitting quietly beside Rose, two boys about her age walked by. They were carrying a surfboard, table-fashion, covered with an assortment of shells and seaweed. They both glanced at Rose as they passed, but soon put down their board and walked back to me. They asked what was wrong with Rose. I explained that she had had a seizure but would be fine when she woke up. I asked about the treasures they were carrying on their board. I shared that Rose would have loved to see their haul from the sea if she were awake. They walked back to their board and one returned carrying a giant pin shell. “Give her that when she wakes up” he said. We still have this treasure.
Seizure Mama speaks to parents:
There will be many children who do not understand seizures Some children will be afraid of your child after seeing him/her seize. There will be a stigma. It will be harmful and painful.
There will also be children with great kindness, who will be protective of your fragile child. They will be loyal friends. Relish the memories of the kind kids. They are the angels of this broken world.