Seizure Mama and Rose

Chapter 43 from memoir, Seizure Mama and Rose by Flower Roberts (Amazon)

After the “woodstove” seizure we scheduled another week at the Epilepsy Monitoring Unit at our favorite hospital. This was our third trip to an EMU. We knew what to expect. Rose was homebound from school.She was nineteen years old. Her senior project was about all the types of epilepsy surgeries and their success rates. We all knew that surgery might be her only hope.
All the stops were pulled out for this visit. We needed a special test to pinpoint the source of her seizures. The procedure required two sets of data for comparison. One SPECT would be done between seizures(inter-ictal) and the other would be done during a seizure. I will not pretend to understand all this. I know that to get the pictures needed, radioactive dye has to be injected before the scans.
We got the first scan done. I guess this was like a control in an experiment. This was the “normal” picture of what was going on in Rose’s brain. The hard part was to get the next data. A seizure had to be caught early, the dye injected, and the scan done immediately afterward. The technicians who did this scan were highly trained, but this hospital only paid the specialists to work from 7AM to 7PM weekdays. This meant that if Rose had a seizure outside of that window, it would be wasted. No point injecting the expensive dye; no one would be on call to do the scan.
As luck would have it, Rose had many seizures, but not between 7AM and 7PM. We left without the results that we needed. All involved were disappointed – her doctor, her beloved nurse Micheal, and the staff. They all knew Rose well at this point and understood that she was in danger. We all knew that there was no hope for a healthy future without some new treatment to stop these terrible seizures.
We did start on a new drug after this stint at the EMU. I had read about a totally different drug that had just come out in Germany. I asked about it to someone involved with Rose’s case. This new drug worked with the potassium channels of nerves, instead of the usual sodium channels. I do not know anything about pharmaceuticals, but I knew the twenty plus drug combinations that we had tried thus far were not working. We were ready to try any new drug from anywhere.
This new drug was ordered and added to her cocktail. We were desperate to help Rose. She was to the point of wearing a bike helmet during certain times. We couldn’t prevent these seizures, but we could protect her angry brain.
Seizure Mama speaks to parents.
Going to an EMU(Epilepsy Monitoring Unit)is a scary step. We were amazed at the highly skilled people who worked there. We made three trips to the EMU at our favorite hospital in a neighboring city. The doctors and nurses there knew how to put us at ease during this stressful procedure. Nurse Michael is one of Rose’s heroes. His visits to her room were like rays of sunshine. The team of neurologists really study the patients while they are in an EMU. Although we did not get the test results we could use for surgery, we did get information that was used to make better drug choices. The new drug from Germany was a game-changer.

Chapter 42: Blood on the Rocks from Seizure Mama and Rose by Flower Roberts on Amazon

I was sitting on the couch watching television. Rose got up from her chair to change the channel. There was a crash. She fell toward the right of the TV cabinet and hit her head on the heat shield of the woodstove, just inches behind its sharp iron corner. There was blood all over the rock hearth.
I usually rush to help, but this time I couldn’t move. Her dad appeared by her side. He cradled her head in the crook of his arm until the seizing stopped. I was frozen on the couch. I was no longer in charge of myself.
All I could do was scream. It came from somewhere deep inside of me. It was not human, it was primal, from the past, from somewhere far away. It was like something shattered and an explosion of sound came through a hole from somewhere else. I couldn’t stop this scream. I was hollow and rigid. A funnel for this noisy force passing through me. I was empty. I was gone. There was only this scream that would not stop.
I do not know what happened next. I was blind. Everything was whooshing out from me so that nothing could enter. It was like I was purging my body of all its emotion and energy. I was exploding and emptying. I was that scream and nothing more. Years of fear and sorrow had built up and this was what was left of me. My shattered soul and this scream.
The heat-shield on the woodstove was bent, but I was broken.
Rose’s daddy had to help Rose to her bed and clean up the blood. I sat on that couch drained and silent. My eyes were wide as I sat there trying to process this terrible event. All this blood on the rocks. Knowing Rose’s temple had come within inches of the solid corner of that dangerous stove. We used to keep a fence around it,but when the children got older, we took the fence down. We kept pillows on the hearth corners just in case Rose fell near the stove. But you can’t make a woodstove safe. You can’t make it soft and cold. At least it was spring, so it was not hot. She could have died, again, right here in this house. Right here in front of her ever-present, 24/7 mother.

Seizure Mama speaks to parents:
After this event, I decided I was done with everything else in this world. I was doing nothing else but being Rose’s mama. This had to stop. She was four inches from a fatal fall. Nothing else mattered. I quit my job as an eighth grade science teacher as soon as we got an Epilepsy Monitoring Unit appointment. I was SEIZURE MAMA full-time. I read everything from everywhere about seizures and epilepsy drugs. It paid off.
I was truly afraid that I was crazy and damned after this. I stayed electric for a long time. It was at this point that I knew we were both in danger. Rose needed these seizures to stop and I needed to know she was safe. This constant risk and fear had wound me up into nothing but nerves. I am still not like I was before. I am not strong enough to relax in this broken world. I am not strong enough to love someone who is constantly in danger. We have been tethered together so long that I am not sure we will ever feel like two truly separate people. I am glad that Rose is away in college, so that we have time to be individuals. Maybe, we both can finally heal up and relax around each other.

Chapter 41 of Seizure Mama and Rose by Flower Roberts

I had spent many months in pain due to my crooked and arthritic right knee. I had to stand on my feet most of each day teaching eighth grade science. Every move involved pain. I could not sleep at night because of pain. My back and hip began to hurt and my blood pressure went up. I was headed downhill fast. My orthopedist drained fluid off my my knee and gave me shots many times. I had arthroscopic surgery to remove the loose cartilage. The surgeon said my knee looked like a junk yard inside. When I could stand it no longer, I inquired about a knee replacement. The local doctor said I was too young to have one. I was only forty-eight, but I was miserable, unwell, and depressed due to the constant pain.
I went to the neighboring city for a second opinion. I met with the surgeon who had done both my mother’s knee replacements. I was x-rayed and examined. The famous surgeon agreed to do my surgery. I was so relieved. I still remember how it felt to know that something would finally be done to help me.
After surgery I had to work very hard in physical therapy to get “classroom ready” in six weeks. I knew I would be going back into a job where I stood on a hard floor all day and then climbed out my low window to direct parent pick-up line traffic in the afternoons. There would be no slacking on my part. Every person has to pull their own weight in a middle school.
My husband worked from home those weeks following my surgery. It was good to have him taking Rose to school and picking her up in the afternoons. He drove me to my follow-up doctor’s appointments. Everything was going as planned. We were just weeks away from getting back to our normal routine.
Late one morning, the phone rang. I knew by my husband’s reaction that something had happened to Rose. He told me that she had just had a seizure in the driveway of the school planting roses with her horticulture class. Her dad rushed out of the house to drive to the high school. There was no time to wait for me and my crutches. I had to call my neighbor to give me a ride to the school.
My neighbor pulled up behind our van at the scene of the accident. I carefully climbed from her car to go check on Rose. She was bloody and dirty with an overturned wheel barrow nearby. She had been transporting roses to be planted along the drive.
When Rose tells this story she likes to pause and ask the listener if they knew what kind of roses she was planting. “Knockout roses,” she says like it is the punchline to a joke. That’s my Rose.

Seizure Mama speaks to parents:

This was one of those times when I felt that a higher power was pulling my chain. Was it not enough that I had just had surgery? Could we not receive one medical emergency at a time? Could God not let me get back on my feet before knocking my baby down?
We did not know it then, but a cluster was starting with this “Knock Out” seizure. Just as I got healed up enough to go back to teaching middle school, Rose went homebound again. It was the last semester of her senior year.
She was not happy about leaving school. Her school was big. There were many steps. The staff had always been very supportive, but they could not be with her every second.
She stayed at home with her dad. She worked on her senior project. He took her to special events at the school when they occurred. I was across the road trying teaching at middle school and trying to carry on. We thought this would be the new normal. But the next time she went down, mama was the one that got broken.

Chapter 40 from Seizure Mama and Rose by Flower Roberts(on Amazon)

The softball saga continued. I stayed at the middle school to finish up some things before heading across the road to get Rose after practice. We now had cell phones. Mine rang. Someone from the team called to tell me that Rose had a seizure in the field house. As I was driving to the high school the phone rang again. Another seizure had started. I entered the building to find Rose on the concrete floor among metal pieces of equipment. Another strong seizure started just as I arrived.
I covered Rose with my coat and administered her emergency medication. The seizure stopped. Two of her teammates waited with me. It seemed like forever before she began to stir. I was afraid that she had been injured in the fall. I was hoping there were no broken bones or a concussion.
When she came around she was angry. It took a long time to calm her down. I worked very hard not to break down. I don’t know how I got to be such a good actress. I guess it was teaching middle school. Walking through fire without going up in flames is an acquired skill.
I still remember my panic. I was afraid she would break free from me and get hurt on all the equipment. I was so grateful for those two girls. They did not know what to do, but they stayed with us. Just having them there was a comfort. One of these girls is now a high school teacher and coach. Bless her.
In the end, Rose did not make the team. She was disappointed, but I was relieved. The main thing was that she had the guts to try and stick with it. She felt the fear and did it anyway. I am still learning to be that brave.

Seizure Mama speaks to parents:

I wanted so badly to say no to softball. I felt it would be too much for Rose. I had learned not to get in her way. She already had enough hurdles to get over without her scared mama being another blockade.
It’s so hard to be brave over and over again. It is exhausting and draining. The alternative is much worse. This is your child’s life, seizures and all. Don’t postpone life until the seizures stop. If we had done that, we would have waited decades.
This is the hand that you have been dealt. Bluff if you must, but play the hell out of it.

My new reality is that Rose is hours away. No matter what happens, I will not be there to help.

I can no longer hover and smother.

Rose hopes to live outside the country. I will not be there either.

Rose owns her life now. She also owns her epilepsy.

After decades of my being constantly on duty, I have been dismissed.

I am thankful in a way, but the worry is something I will carry with me no matter where Rose goes.

That is my new project. Letting go of the worry and the fear.

Rose has done it. So should I.

Mama Flow

Chapter 39 from Seizure Mama and Rose by Flower Roberts (on Amazon)

I did not show up until the very end of this event, so this is a secondhand story. Rose’s brother was on duty for this seizure. He had taken her to a high school basketball game. She was helping sell tickets to raise funds for the girls’ softball team. Rose was determined to try out for the team. She had been going to practices after school to prepare for tryouts. I drove across the road in the afternoons from my school to hers to wait for her to finish practice.
I parked my car so that I could watch the field. I was a nervous wreck during these practices. I couldn’t believe I was seeing my fragile Rose running and batting like a champ. She was so tough and determined. How could she be this brave?
Rose was circling the basketball court in the gym trying to sell tickets during breaks in the game. I am not sure if the seizure occurred between quarters or some other break in the game. All I know is that she had a seizure under one of the baskets. Down again on that familiarly hard gym floor. Her brother made his way to her. She told us later that she was blind and had to touch him and hear his voice before calming down.
When her dad and I arrived, she was on a stretcher. We transferred her to our van and drove her home.
No harm. No foul.

Seizure Mama speaks to parents:

Epilepsy everywhere, no time to stop and think!
Let them try out for teams. Let them go to games.
This is your life, not a dress-rehearsal.
What if we had sequestered Rose at home for twenty-four years?
Who would she have become?
She would not be the super strong young lady she is today if we had hidden her away.

Rose wanted me to add that after this seizure, strangers touched her while she was still blinded by the seizure. This scared her very much. She frantically called for her brother whose touch and voice she recognized. I can’t imagine how terrifying it would be to be touched while blind and confused.

I dread writing a Then & Now about this chapter. It still haunts me because I was not there!

Listen to me MAMAS you cannot always be there. That’s a tough part of this. I will ponder what I can tell you that will be helpful. “Not being there.” is where we are now with Rose far away. This is a necessary part of the journey. I must relinquish my Seizure Mama role and pass the ‘epilepsy baton’ to its rightful owner…Rose.

I do wish one of you would give me a pep talk!

Chapter 38 from Seizure Mama and Rose by Flower Roberts

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 aisle in her direction. I knew she had spotted the dog’s service vest. I also knew that she would be interested in watching the dog at work.
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. Since 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.
Rose watched the dog approach. The two adults were deep in conversation. They were paying attention to each other and not the dog. The dog turned and walked away from the two people until it stopped and stood in front of Rose. I watched as my daughter and this dog looked into each others eyes.
Both men were surprised by the dog’s behavior. One of the men pulled on the dog’s retractable leash and gave a command for it to return to the side of the other adult. The dog hesitated to leave Rose, and paused for a few more seconds before rejoining his human companions.
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 now took on a different meaning. The dog was a seizure alert dog. It somehow 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 oncoming seizure, but I told Rose that possibly he could smell the 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 to parents:

We have not gotten a seizure dog for Rose during these twenty-four years. We had other dogs while she was growing up, which would have complicated the training of a companion pet. We did seriously consider a seizure dog one during the times when her seizures were frequent. A trained seizure dog 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 while the companion person is having seizures. Rose’s seizures had become 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 was walking beside a road. A dog could have at least stopped traffic.