Whenever something bad happens, we dread how Rose will respond.
We wonder whether she will explode or implode.
There is no moderate middle ground emotionally.
Rose has to be made aware of sad events slowly and gently.
It’s like we must postpone our own sorrow and grief to navigate hers.
I am not sure why this is.
I know hyper-emotional reactions is part of TLE(temporal lobe epilepsy), but we never found her seizure source.
Is it her medications? The proneness toward depression? The smallness of her world making everything bigger?
I do not know the cause.
I only know that a big wave is coming.
I hope I can save my Rose and myself.
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!
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.
Story # 23 (August 2002)
Rose’s latest drug combination became a recipe for disaster. Now she was constantly dizzy and nauseated. She was limp and barely moving or responding. She was silent. She was being poisoned.
We put her on the couch so we could all keep an eye on her. At this time, she was on three drugs,one of which was an extended release form. One drug must have amplified the affects of the other two. Her nausea and vomiting soon turned to dry heaves and bile. Her seizures were clustering. We knew she was in danger.
We called the on-call neurologist at about 11PM. The doctor’s foreign accent made our conversation difficult. My husband and I were both on the line listening. We thought the doctor said to use the emergency drug if Rose had another seizure and then take her to the Emergency Room if she had another seizure after that. Was that really what the doctor said? Two more seizures and then the ER?
The next morning Rose was very pale, weak and, listless. She barely moved. We tried desperately to get her to eat and drink each time she woke up. She was fading before our eyes. I called the doctor’s office as soon as it opened to report Rose’s condition. I cried as I explained that she seemed poisoned by these three anti-convulsant drugs.
The wise nurse calmly told us to get a timer. She said to set it for twenty minutes. Every time it went off, we were to wake Rose up and make her sit up, and sip some water. We set and re-set the timer all day long. For hours we watched her and waited for the timer’s bell to ring, over and over.
Hours later she began to improve. The poison was being diluted. Rose was re-hydrating. The color came back in her face. She was safe. No trip to the Emergency Room required.
Seizure Mama speaks to parents:
We kept gel in the refrigerator to put on Rose’s arm for nausea. There were several times when her vomiting led to seizures because she had thrown up her medication. We began sifting through her vomit if it occurred soon after a dose of medications. I know this seems gross, but you need to know whether a dose needs to be replaced or not. Doubling a dose may be worse than missing a dose. You need to be sure which to do.
This particular situation was the exact opposite of seizing due to lack of medications. Rose was sick and seizing before ever throwing up. Her dosages were too high. The combination was too much. She was listless and unresponsive. I still distinctly remember this because I was so afraid.
Know your child’s dosages and drugs. If you go to the Emergency Room, drawing blood and checking drug levels may be an important piece of information for the doctors involved in the treatment.
We wrote down all dosages on a calendar and used a pill organizer. There was no guessing about the medications that were taken. We also recorded how the dosages affected her. This information was used to convince the neurologist that she needed a different drug or combo. Do not count on your memory. Write it down.