Seizure Mama and Rose

There was so much more to the day of Rose’s graduation than appeared in those pages of Seizure Mama and Rose. The various scenes play out in my mind clearly even though it was a decade ago. This was an event that we doubted would ever happen and here we all were, the whole family, celebrating this milestone together.

We walked Rose to her designated spot in the graduation line-up inside the building. Her dad, her brother, Rose and I were greeted by many friends and faculty. We peeked through the courtyard window to see the huge banana tree that Rose had given her beloved horticulture teacher. It was special to see that a stand-in for Rose had been present at the school while she was home-bound.

My husband had set up a tent at the back, right top of the stadium. Our four elderly parents needed the shade. Everyone had cold bottles of water. I could see the family and they could see me. At first, I was alone in the rows of folding chairs for the chorus. When they marched in, one of my former students sat beside me. She needed me there. She was in trouble again. Her skirt was too short. She would not be allowed on stage. I had to talk her down, just like old times in middle school.

The graduates marched in. Rose sat on the front row. I could see her every move. I could watch Rose. The family could watch me. All was well. We could relax and enjoy this miracle together.

My seat was at the base of the steps coming off the stage. I had my blogging camera. I got perfect photos of Rose’s friends and my former students. It was a parade of our past flowing by in a sea of green. My heart was full.

After the ceremony, we talked to dozens of dear friends. There were smiling, familiar faces everywhere. It felt so good to be surrounded be so much love after our isolation. I felt like the universe had opened up and welcomed us back in.

Treasure your good times. Take pictures. Talk about them. Write them down. Relish them. They are gold to the soul.

Mama Flower Roberts

https://blog.feedspot.com/epilepsy_blogs/

Chapter 45 from Seizure Mama and Rose by Flower Roberts (Amazon)

Mama: Stage Right

Rose was determined to walk across the stage at her high school graduation, despite being homebound the last semester of her senior year. Her dad and I were afraid there would be too much excitement and it would be too hot for her to sit in the sun for hours. But our Rose gets “bulldozer” determined, so we got out of her way.
I was allowed to sit up front to the right of the stage with the chorus.I had a perfect view of Rose’s seat in the front row. So there was Mama with her camera sitting at the bottom of the steps where each graduate descended after receiving his/her diploma. I took pictures of all Rose’s friends and my former students from my seat. Rose made it across the stage and down those steps without incident.
Our entire family had set up a tent at the back of the stadium. We heard cheers go up in the back from her brother, cousins, grandparents ,aunts, and uncle as she marched up, across and down. We had made it, again. Mama got to witness it all from the best seat in the house. I did not, however, sing with the chorus, even though I felt like singing.

The graduates filed out of the stadium at last. My group at stage right was to follow behind them. As I marched out, another cheer went up from our familiar tent in the back. I did a little victory jig to celebrate with our family. That’s when I glanced back. Much to my chagrin, the honored officials in their robes from front-and-center stage were in the procession right behind me.
Mama and her camera had done a little victory dance in front of the dignitaries. I am sure they wondered why a crazy mother had been allowed in the procession. We had pulled it off again. Rose in a cap and gown instead of a ball gown. Hooray!

Seizure Mama speaks to parents.

Your child needs great memories. Get out there. Celebrate every victory. Go ahead and dance in front of the dignitaries.

( My daddy told me this when my children were little and I was exasperated.)

Mama Flower Roberts

Chapter 44 from Seizure Mama and Rose by Flower Roberts (Amazon)

Rose’s last trip to our favorite EMU occurred the spring of her senior year in high school. We were all hoping to get the test results early enough for her to get out to attend the prom. Rose’s brother was coaxed into taking her,so 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 she needed was to be released from the hospital in time to attend the event. We thought that surely two weeks was enough time. We never dreamed we would cut it so close.
The story of the scans is a separate story. It deserves its own pages. Rose did get out of the EMU in time for the prom. We checked out on the Thursday afternoon, before the prom 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.
Rose 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 to parents:

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 EMU 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.

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.