Story #3: The Big One

Seizure number thirteen made it official. Rose was four years and three months old. Her first febrile seizure was when she was eighteen months old. All her seizures thus far had been accompanied with illness and fever. This one was different. There was no fever. There was no illness.
Rose was eating a brownie while sitting at her place at the table. Her eight year old brother commented that her mouth was too full. I looked over to see Rose holding a napkin in front of her face. I pulled it down to see chocolate drool leaking from the side of her mouth. Her chin was quivering. I leaned Rose over to the side to remove the chewed up brownie from her mouth. By now her eyes were blinking. I carried her to the nearby couch and placed her on her side. She tried to sit back up and pointed to the bathroom.

I carried her there thinking she might need to vomit. Her arms went out stiff with her hands bent down at the wrists. Instead of entering the bathroom, I turned and carried her to my bedroom, the room with the phone. This was not the usual seizure.

I dialed her pediatrician’s number and got his partner, who was on call. I described what was happening to Rose. By this time her knees were bent up and her lips were blue. The doctor told me that if the seizure kept progressing that she may stop breathing. Her torso was now tense and writhing. She was in a twisting knot and turning blue. I was instructed to call an ambulance.
I remember responding, “They can’t find us.” His reply was to get her to a hospital, fast. I hung up the phone and picked up my blue, little girl. I carried her up the steps to the carport. As I strapped her into her seat, there was an explosive vomit. Then she slumped over and became still. I thought she had aspirated vomit and couldn’t breathe. I unbuckled her seat belt and dragged her limp body across my thighs and beat on her back. Nothing happened.
We had a bag phone back then. I got it out, unzipped it and instructed her brother to hold it as high as possible to get better reception. I dialed 911. What was my emergency? Where was I? How old was the patient? There were too many questions. I had to describe where our driveway was because there was no street sign. I had to tell how to open our gate to get into the driveway. In the country, out in the woods, no address, no neighbors. I was talking words, but my mind was praying, “Give her back. Give her back.”
Finally, I was being told how to help Rose. She was still and blue. “Put her on the floor of the van” the dispatcher said. “Lay her flat on her back” he instructed. “Start CPR” he ordered. As I was getting ready to follow more instructions, Rose took a deep breath. I was relieved to see the blue in her face fading. Now my prayer was, “Let her be whole.”
I finally took my eyes off of her to notice that it was raining. I looked over at her brother who standing as tall as he possibly could, holding the heavy bag phone over his head and shaking.
Then I heard a car approaching. There had been no siren. It was a friend from church who was an EMT: First Responder. As I started babbling about what had happened, he calmly said ”Go change your clothes, I’ll watch her.” For the first time, I noticed that I was covered in vomit. I was so relieved to have some help. I rushed back into the house to change my clothes and returned just as the ambulance and her father arrived.

Seizure Mama speaks to parents:

This event was an actualization of many of my recurring nightmares.
1. An emergency alone. No one to help me in my isolated location.
2. One of my children dying in my arms because I do not know how to save my own baby.
3. Calling 911 and having no one answer, or the person who answers does not understand what I need, where I am, etc.

Yes, all of that happened together like a cluster of calamities from my darkest dreams. I will never forget that helpless and hopeless feeling.

Yet, I will also remember the great relief I felt with Rose’s big breath and the familiar face of a friend coming to the rescue. That pure sense of gratefulness that I felt when I was no longer alone.

This was the big-bang-beginning of our journey.

The enemy finally had a name, Epilepsy.

Seizure Mama is born!

Story #2: Fevers and Seizures

Rose had many ear infections that were usually accompanied by fevers. Unfortunately, these fevers sometimes caused febrile(with fever)seizures. We were vigilant about taking her temperature anytime she was sick. If her temperature was elevated, we gave her a children’s liquid form of an NSAID(non-steroidal anti-inflammatory drugs). We tried diligently to prevent her fevers from getting high enough to supposedly cause a seizure. We referred to her problem as a “faulty thermostat”. No fevers, meant no seizures… we thought.
Over the next three years after her initial seizure in the pediatricians office, Rose had eleven more febrile seizures. These were always scary. It seemed as though we just couldn’t prevent them, even though we tried to intervene with over-the-counter medications. We began to suspect that there was more to these events than just fevers.
I began wondering if this condition had a source that was always present, not just something that showed up with fever and illness. Was there something in her brain causing these? Maybe a lesion, tumor or chemical imbalance? When would this end? All children get sick, but most don’t have seizures accompanying illnesses.
I began to feel that the cause was lurking somewhere in Rose, waiting until she was weakened. I suspected that this was no visitor that showed up with illnesses and fevers. This was a resident. I constantly watched for flushed skin and chin twitches.
I did some research. I read all about febrile seizures. No one mentioned the word epilepsy. It crossed my mind, but not my lips. Not my child. It was these ear infections. If we could get them under control, things would be fine. An Ear, Nose and Throat specialist, that’s what we needed. Get some tubes in those ears so that they could drain, the infections would clear, the fevers would stop. Voila’!

Seizure Mama speaks to parents:

Later on there were some suspect incidences that did not involve fevers. Rose referred to them as “tornadoes in her mouth”.  I did not know anything about partial seizures. I had never researched epilepsy before. I did not want it to be epilepsy, so I ignored some signs. That’s called denial. Would my being more proactive have made any difference? No one can know that. I did the best I could with what I knew at the time. When there were undeniable signs of something more, I jumped into action. For now the diagnosis was febrile seizures, nothing countered that. I am not one to borrow trouble.

Story #1: Hot Diaper

The warning came in the form of a hot diaper. I was sitting at the kitchen table with Rose on my lap. I felt extreme heat radiating across my thighs. I thought I had spilled a cup of hot coffee into my chair, but there was no coffee near me, only squirming and fussy Rose.
When I figured out that the heat was coming from her diaper, I panicked. How could her pee be that hot? All I could think of was getting her to her pediatrician. I knew the fever had to be really high for her urine to be this hot.
I grabbed Rose’s diaper bag along with my purse and headed out the door. I drove straight to the doctor’s office even though I knew it was their lunchtime. I pulled our van into the parking lot facing the door of the office. I paced back and forth outside the open van door while Rose sat quietly in her car seat. The nurse appeared to unlock the door. I removed Rose from her seat and hurried toward the nurse. I quickly explained why we were there without an appointment.
It was a relief to be ushered into the office and down the hallway toward the examination rooms. As the nurse put the thermometer in Rose’s ear she stiffened. Her head tilted back and her eyes rolled up in her head. She was twitching and twisting so strongly, that I could barely keep her in my arms. I screamed the doctor’s name. “She’s having a seizure.” I heard myself yell.
The doctor appeared beside us and cradled Rose’s head as we moved as a group into the nearest patient room. Rose was still jerking as we gingerly placed her on the padded examination table. Then she was eerily still and ashen. She didn’t look the same. Had something changed in those few minutes? Was Rose still in there? I held my breath and waited for a movement or sound. Waiting for some sign that this was over and Rose was back.
The doctor stayed with us. Silently administering acetaminophen rectally. He sponged down Rose’s arms and legs with clothes that were wet with tepid water. Rose began to squirm. I remember taking a deep breath. She stirred some more then looked around and sat up.
The doctor left to see other patients while I sat in the chair holding Rose. I was stunned at what had just taken place. Rose eventually got down on the floor to play with the toys on the rug, as if nothing had happened. I couldn’t take my eyes off of her.
I had never seen a seizure in person before. I didn’t know anything about childhood seizures. Mama had some serious learning to do. This was not in all those parenting books, or maybe I skipped those parts.

Seizure Mama speaks to parents:

After the shock wore off, I played the terrible parent game called “SECOND GUESSING YOURSELF”. If you have never played a form of this game, go on to the next story. The rest of you, here we go.

This form of the game is called “What if I had…?”.  It involves a kind of scientific twist like forming an if/then hypothesis and guessing the various outcomes. In the game you get to be the cause of every calamity. It’s a great game to play at night, in the dark, when you should be getting some much-needed rest.

I will demonstrate.

1. IF I had changed Rose’s diaper and given her a cool drink instead of rushing to the doctor’s office, THEN she might have cooled off and never had that seizure.
2. IF I had changed Rose’s diaper and clothes to a cooler outfit, THEN…
3. IF I had given Rose a dose of an NSAID(non-steroidal anti-inflammatory)drug and a cool drink, THEN…

The possibilities of these variations are endless. You can play all night if you wish.

What is the point of this game? Blame of course. You are in charge of your world, so this seizure must be your fault! I know, that sounds crazy right? Then quit thinking that way about yourself. Bad things happen. Maybe things could have been done differently. Maybe there may have been a different outcome. But you don’t know that. So when you catch yourself playing this terrible game, pat your tired self on the back and roll over and get some sleep.

Dear Parents

Introduction for Watching Rose Rise:

I wish I could claim that this is a “How to” manual for raising a child with epilepsy.  It is not.  This is the story of raising our daughter, Rose. We made many mistakes.  Our family did the best that we could despite our own fears and ignorance. We were never trained as parents, much less as medical specialist. Our job was to raise Rose, not to cure her. We found the best doctors and tried many medications, but treatment is not a cure. We did what parents do. We flew by the seat of our pants with our hearts wide open and breaking.

I do not recommend you follow this twisted trail of breadcrumbs that I have left here for you to read.  I only hope that you recognize your own struggles among these stories and realize that you are not alone. Someone else has been where you are now, as a terrified parent, and survived to tell the tale.

Just remember you do not get to be the superhero in your child’s story.

Yours is a supporting role.

You child is the star.

When they fall down, you help them up.

Eventually, they will not need your help to get back up.

Your job is to get them strong enough to rise alone.

The getting back up is the important part.

When they are strong enough, you can stand back with pride.

This is where we are now…

Watching Rose Rise

 

 

Another Mother

Rose and I had a lot of help during these years of struggle. Rose’s dad kept working through it all while I quit teaching part-time at the local college, then closed down my garden art business, later left my middle school job and lastly kissed that community college good-by for a second time. Rose’s dad has been the steadfast supporter, while I have fluctuated between fearless caregiver and emotional wreck. My husband is still working after thirty-eight years to keep our insurance. Hang in there Honey!

Rose’s big brother missed having a care-free childhood because he had to be strong and serious. I still send him silly photos on his phone to make sure he laughs once in a while. He is like his daddy. He will carry the load and stand straight up doing it. He has been there for Rose over and over again. Playing the role of goofy protector to keep her safe and laughing. I hope he surrounds himself with fun and joy as a man.
Our whole family has traveled with us on this journey; two aunts, four grandparents, a beloved uncle B and two cousins. Coming to parties and throwing parties. Showing up wherever we were with food and gifts. Calling to check on Rose. Taking her shopping.  Playing games with her. Doing what families do.
Our church has been a blessing through it all. It is like our second home. We went there during the terrible times when we did not go anywhere else. Rose got to be around familiar folks. The other children knew about her seizures. These families supported us through the tough times. Our church friends brought in meals for our family and toys, games and coloring books for Rose. Three older gentlemen made it a point to call us every couple of weeks. “How is our girl?” they would ask. Ronnie is still around. Phillip and Blake are no longer living. Rose loved them dearly and took each one’s passing especially hard.
Rose has some friends that have stayed loyal through the years. Leigh Ann, Peter, Ingrid, Aly, Erick and Christina are still her support team. These kids are like family. We are so grateful to them for helping us raise Rose. These peers were especially important through the teen years when Rose’s parents were so ignorant.

All these people gave all kinds of support, but what I really needed was another mother. I needed a mother who had raised a child with epilepsy to tell me how the hell I was going to get us through this. I did not want that other mother to be going through her journey along with me. I needed a mentor. Someone who had lived through all the trials and tribulations and had acquired the skills to stay afloat. Someone with stupid stories and anecdotes. I just needed one other mother to reassure me that we could come out the other side of this terrible tunnel. I needed to see the light.
My forays on the Internet got me drug names and possible treatments. I did not understand most of what I read. I had no medical training. I wasn’t a chemist. I did not need all that jargon. What I really needed was another mother.
That is why started the blog, Seizure Mama and Rose. I was determined to be that other mother. So that some scared mama who was going through that tunnel in real-time could glimpse what life might be like at the other end.

When Rose calls home from the university,  I tell her where our views have been.  I say, “Another mother has found us.”

Hang on “Another Mother”, Rose and I are right here.

SEIZURE MAMA

The Jacksonian March

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!

Seizure Mama

https://www.epilepsy.com/release/2018/12/epilepsy-foundation-issues-statement-indiana-basketball-player-living-seizures?fbclid=IwAR38FYNbl6LRLxX19SBTZ10OzPg-HvO2y9SmfW_4emyd6nUnzac9wbSwU9c