Fear kills Joy
Kill the FEAR!
Fear kills Joy
Kill the FEAR!
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!
Rose went back to our favorite hospital’s Epilepsy Monitoring Unit the last semester of her senior year in high school. Her seizures had come back with a vengeance. They were long and strong. She was getting hurt during the falls. She had gone home bound from school due to the falls and injuries.
We were hoping to get new and different set of scans this time. These two SPECT scans together would reveal what was going on in Rose’s brain during a seizure and between seizures. Then the two could be compared. We hoped this new information could help pinpoint the source of her seizures.
Rose arrived at the EMU just two weeks before the prom. We were all hoping to get the results early enough for her to get out and get ready for her prom. Rose’s brother was coaxed into taking her. He planned to come home from college that weekend to be her escort.
Her dreamy satin dress had been purchased and altered, his tuxedo had been rented. All that was needed was to be released from the hospital in time to get there. We thought that surely two weeks was enough time. We never dreamed we would cut it so close.
The story of the scans will have to wait. They deserve their own pages. Rose did get out of the EMU in time for the prom. We checked out on Thursday afternoon, the prom was on Saturday. Rose did get to go. She did get to dance. Her brother was there to watch over her. She had her emergency medications in her tiny purse. We dropped Rose and her brother off at the Civic Center and we went to wait at a restaurant across the street. Her father, my sister and I were only a phone call away. We had pulled it off in the nick of time.
She looked beautiful. Her hair had roses in it that matched her salmon-colored dress. The bodice was covered in dangling sparkles. The corsage on her arm contained roses and baby’s breath. Our Rose was a princess and a warrior. While her classmates had spent the week getting their nails done and going to tanning beds, our Rose was in a hospital with electrodes glued in her hair.
So after nine days in the hospital, Rose goes to the prom. From hospital gown to ball gown. That is how Rose rolls.
SEIZURE MAMA SPEAKS NOW
Here is an example of balancing needs and wants. Rose needed new medical tests to get information to treat these terrible seizures. We were not going to wait any longer. When the opening in the schedule came, we took it. Rose wanted to go to her school prom. We planned for it and she went. We could relax because her brother was with her and we were right across the street, ready to swoop in. The faculty and her friends knew where Rose had been the previous weeks. No crown needed, she was queen.
One afternoon, Rose and I were shopping in a large department store. Rose was several yards away from me between the clothes racks. I could see the top of her head. I saw her head turn to look at two people and a dog strolling through the aisles in her direction. I knew she had spotted the dog’s vest. I also knew that she would be interested in watching the dog in action.
The big, shaggy hound was wearing a red triangular vest on its harness. The vest was a sign that the dog was a service dog of some sort. Our family had discussed the possibility of getting a ‘seizure dog’ several times. Rose had no aura before most of her seizures. Having a dog that could alert her that a seizure was coming would be a nice warning. Rose could at least get to the floor before falling down.
I watched Rose watching the dog approach. The two adults were deep in conversation. They were paying attention to each other and not the dog. As I stood watching, the dog turned and walked away from the two people. It stopped and stood in front of Rose. I watched as my daughter and this dog looked into each others eyes.
The trainer was surprised by the dog’s behavior. He pulled on its retractable leash and gave a command for it to return to the side of the other adult. The dog hesitated to leave Rose. He paused for a few more seconds, before rejoining his trainer. The two seemed surprised by the dog’s break in training.
I spoke to the two people. I told them that Rose had epilepsy. Their looks of dismay turned into smiles. This gentle giant of a dog was a seizure dog in training. What they first thought of as bad behavior on his part, now took on a different meaning. The dog knew that Rose had epilepsy. His name was Mr. Biggles. He was with his trainer and new owner.
I got the name and number of the company that trained the dog. The threesome continued to slowly stroll around the store. Rose and I looked at each other in wonder. “How did he know?” she asked me.
It was my turn to be concerned. My first thought was that maybe he sensed an on-coming seizure. I told Rose that possibly he could smell the various seizure medications in her sweat?
Either way, I had a new hope for Rose. Maybe someday a dog could help to keep her safe.
SEIZURE MAMA SPEAKS NOW
We have not gotten a seizure dog for Rose during these twenty-four years. We had other dogs while she was growing up. This would have complicated the training of a companion pet. We did seriously consider one during the times when her seizures were frequent. They can be very expensive.
I did talk to a woman from this company about training a dog for Rose. She said that the dog must be trained with the person while having seizures. Roses seizures became so infrequent, that it would not be possible to train a dog for her. This was a mixed blessing.
Now that Rose is an adult, she may need a service dog just for protection. She goes places by herself. She is very independent. Several weeks ago, Rose had a seizure while away at college. It was at night while she walking beside a road. A dog could have at least stopped traffic.
If Rose ever needs a seizure dog, this little incident that happened in the store years ago convinced me that there are dogs who can sense more than her mama can. I am sure that Mr. Biggles has been a blessing to his owner.
She fought gravity with her face.
Knocked off her feet, but not defeated.
She got up and walked away
and left that bloody asphalt lying there.
Keep it up Champ.
You won again.
Story # 25 : Halloween in the Hospital
On October 27th Rose started vomiting. It continued for hours despite applications of the anti-nausea gel to her forearm. I finally packed her up and headed to the pediatrician’s office. He did not seem as alarmed as I was. He asked what I thought should be the next course of action. I replied that the next time Rose vomited, we were going to the emergency room. I told him that I knew something was really wrong with her. I did not know how I knew, but my “mama gut” was screaming. This doctor had known us for years now. He knew Rose’s history and he knew I was not an alarmist. He decided to send her on to the hospital to be admitted.
We were quickly checked in to a room. The nurses tried to start an IV. They could not get a needle in because Rose was so dehydrated. The IV supervisor was called to get one started. It was at this point that I realized that Rose’s face looked wrong. Her lips were too big and her eyes looked sunken. This is why I felt panicked. Her face was deflated due to dehydration.
The vomiting continued. They asked Rose her pain level on a scale of 1 – 10. She calmly replied 8. The nurses were startled by her response. She had not mentioned being in pain. She remained stoic through all the poking, prodding and x-rays. The suspected culprit was an intestinal blockage. To everyone’s surprise, two kidney stones were spotted. One was blocking a ureter. It needed to be removed immediately. A local urologist was called to perform the surgery on Halloween Eve.
When Rose heard that she was going to miss Trick-or-treating, she broke down. This brave ten-year-old patient boo-hooed like a baby. The nurses felt so sorry for her that candy and gifts began to show up in her room. Folks at our church were alerted. A giant bag of assorted candy was collected from the Trick-or-Trunk event. She got more candy than ever.
Seizure Mama Speaks Now
First, I would like to say that you must trust your “mama gut” even when you do not consciously know why you are alarmed. That instinct is like your hard drive. Even though the information is not on your “screen of consciousness” you still get a vibe of alarm. Even though I was not trained enough to know the signs of dehydration, I still recognized that something was physically wrong with Rose.
I would like to add that the following Halloween, Rose dressed up like a witch and delivered packs of candy to the pediatric floor of that hospital. The nurses were thrilled. They, of course, got to share in the spoils. Rose remembered how sad she was to miss Halloween. She wanted to make sure that the kids stuck in the hospital did not feel left out. This is what the seeds of pain can do. They can grow into love and bloom with kindness. Just like my Rose.
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?