Story # 21: Kind Kids
Of course epilepsy came on vacation with us. Rose had three seizures during our week at the beach. Two occurred while swimming in the pool. She always wore a life jacket while in the water and someone stayed an arms-length away. I know it seems risky to let her swim, but she loved it so much. We live on a lake so we 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 it was over and carried her out to a lawn chair to sleep afterward. We suspected that extreme temperature changes triggered seizures. We tried to avoid the water in the mornings when it was cooler. We also covered her with a towel when she got out so she would not get chilled.
Rose also loved the ocean. 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. She also enjoyed searching for little fish and shells in these pools.
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. She had sand on her face and in her mouth. 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 with. 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 walked by. They put down their board a ways down the beach and walked back to me. They asked what was wrong with Rose. I explained that she had just had a seizure, but would be fine when she woke up. We talked about the treasures they were carrying on their board. I shared that Rose would have loved to have seen their haul from the sea, if she had been awake. They walked back to their board. One returned carrying a giant pin shell. “Give her that when she wakes up”, he said. We still have that precious shell.
SEIZURE MAMA SPEAKS NOW
There will be children who do not understand epilepsy and seizures. There will be children who 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. They 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.
This is story #19 in the book.
We had felt good about this neurologist in the beginning. This doctor was cordial, observant and thoughtful. We had previously left all our appointments with several written plans of action in case the first choice did not bring the results that we hoped for. If plan ‘A’ did not work , then we also had plans ‘B’ and ‘C’, if needed. But now we felt like Rose was part of a chaotic experiment without planned strategies or goals.
Rose had a long and strong seizure the day before this appointment. She slept on the way to the doctor’s office. Rose wouldn’t hold her head up during the visit. The doctor seemed not to notice Rose’s lethargic condition. Instead, I was scolded for the numerous calls I had made to the neurology nurses. The doctor mentioned wanting another EEG(electroencephalogram) and the possibility of a VNS (vagus nerve stimulator) placement.
We were taken aback by these suggestions. We thought we had come for a much needed plan for our next trials with different medications. Instead it seemed that we were at the end of the medication regiment and headed for surgery. Our instructions when we left the office were to stay on drugs 3S and 4L. Stay on these two drugs that do not work? What we were doing was not working. Why were we not doing something different?
Here was our nine year old daughter slumped down in a chair, pale and unresponsive and we were supposed to continue on these same drugs and dosages.
We left to office and went downstairs in the building to eat lunch at one of Rose’s favorite restaurants. Rose’s hand was so shaky that she couldn’t use a fork. I had to feed her the slaw. I was feeding my nine-year-old because she could not feed herself, but there would be no change in her treatment? Absolutely not!
We all went back upstairs to the doctor’s reception area. I was so shaken that I could barely speak as I explained to the receptionist why we were back. We had to wait until all the other families had their appointments before the lunch break. It was interesting watching all the other struggling families while we waited. One father was irate and loud about a mistake that was made.
Finally, we got to speak with the doctor again. There was a new plan when we left. I had the doctor write down. I still have the paper. Rose was to go down on drug 4L, off of drug 3S, re-add drug 5K and add on a new drug 6Z. Was this a plan or a punishment? This was like playing a game of random roulette with strong drugs on a young child. Was this new plan better than no change? Hang on. It gets worse from here.
I am trying REALLY hard to finish this book about my daughter’s
twenty-four year journey with epilepsy before she leaves
to go off to college.
I am SOOOOOO proud of her.
I must finish this book before she leaves,
because I fear that reliving her story while she is away from home will make me afraid.
We have been tethered together for these twenty-four years.
Her being gone will be a HUGE adjustment for Seizure Mama.
I need some encouragement.
Especially on days when I don’t want to send myself “back there” emotionally.
I know there is a mama out there
who needs my story to help her get through her own journey.
I am trying to finish for both of us.
Hang in there Mama!
Can I stop being afraid?
Can I stop trying to fix the unfixable?
Can I forgive myself for not knowing how to make this better?
Can I quit wondering if I brought on this curse?
Can I give up and quit trying to breathe?
This stupid struggle is too hard and too long.
PLEASE!!!!!! Can I stop now?