Teeter Tottering

Chapters 42 and 43 of Seizure Mama and Rose are inseparable in my mind. The ups and downs blur together as I remember how desperate we were to help Rose find the source of her seizures and how determined we were to get her to the prom. It was a double time crunch.

We entered the EMU with fear and hope. The seizures kept coming. Rose was getting injured by falling. She was pulled out of school because of them. We knew that surgery may be her only hope. The source of the seizures had to be found for this to be an option. The two SPECTS were necessary to get that information. One without the other was useless. A comparison of her brain between seizures and during a seizure was critical. The ictal SPECT needed occur while the trained staff was there to administer the dye and do the scan.

There have been many occasions of TEETER TOTTER since this one. Times when events take you up one minute and down the next. Hopeful times followed by defeated times. This was so stressful. We wanted those results so badly. Rose needed something to change.

Rose not having seizures at the right times (7AM -7PM weekdays) was disappointing to her medical team and her family. Her time was up and no answers were divulged. The only thing we could do to go to move forward was prepare to go to the Mayo later that summer.

In the meantime, there was a ball to get our Cinderella to. We all focused on that in the end. Everyone was determined to get Rose out of that hospital in time for her prom. Her hair must be done! Her corsage must be ordered!

How could she look so beautiful after such a disappointing and stressful time? That’s just Rose. Her resilience is shocking. She continues to amaze me. I am truly grateful for her strength.

I am thankful we had this happy event to distract us from the failure to get results we needed from the EMU.That is how life is parents. Especially with a fragile child. The ups are super high and the lows are crashing and painful.

I am still riding that Teeter Totter. I guess I always will be. Savor the ups. Hold on for the downs.

This is life you are doing here, not a dress rehearsal. Jump on!

Mama Flower Roberts

Hospital Gown to Ball Gown

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.

Missing the Window

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.

Trauma for Two

This ‘Blood on the Rocks’ event was a turning point for many reasons. I had spent years hovering over Rose to keep her safe, only to witness her near-death experience just feet away from me in our own home. I realized that Rose’s safety must come from inside Rose’s body and brain, not from her mother.

Another revelation was that I was damaged. I had absolutely no control of my body and brain during those moments. The scream started and I could do nothing but let it pass through me. It was not a catharsis or purge of emotions. It was sheer brokenness.

Neither Rose nor I were safe. I had been so focused on saving Rose, that I did not notice my own unanswered needs much less wants. I am seeing that now as my sister takes care of my ninety-year-old mother with dementia. Care-giver burden is a dangerous thing.

Look in the mirror moms and dads. Is your hair coarse? Is your skin color off? Have you gained or lost weight? Look into your eyes, are you still in there? How is your gait? Do you pick up your feet or shuffle? When is the last time you laughed out loud? Are you still fun to be around, or is time with you a pity party? Do you sigh a lot? Ask your real friends if you have changed. They will be happy to finally talk honestly with you.

The rule on airplanes is that the parent puts on his/her oxygen mask first. That is so he/she can take care of your child while breathing. Are you doing that? Who will take care of your fragile child if something happens to you?

This is not about self-care…this is SURVIVAL. Save yourself! Get support. Ask for help. Demand it if necessary.

Mama Flow

Mama Cracks

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.

New Knee and the Knockouts

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.

Look at Both Sides and no More

Many of the traumatic events involving Rose’s seizures caused trauma for us both.

The Status at Softball Practice: Chapter 40 was very traumatic. Yes it was BAD, but there were many good parts that made it less bad. You need to always look for the silver lining of the epilepsy clouds.

Let’s look at the situation further. I was somewhere else when the seizures started. I had to drive to the high school across the road and find the field house while knowing she was in status and time was of the essence. When I found her, she was on a dirty concrete floor surrounded by sport and lawn equipment all of which were metal. It was cold, so I knew she would be cold which is a trigger for more seizures. I did not know if she were injured. When another seizure started I put my long winter coat over Rose to cover her as I used my one and only Diastat, hoping one would be enough. When she regained consciousness, she was blind, hysterical and fighting to get up among all the metal.

I DO NOT play the “What if?” game, so I won’t even start all those fictitious questions. Don’t you play it either. Reality is hard enough without borrowing imagined troubles.

The flip side of the situation was that I was just across the street with a cell phone. Her team mates knew what was happening and called me. They stayed with with us until Rose was cognizant and could walk to my car. I had a Diastat and a coat to cover her. The Diastat stopped the status epilepticus. Rose did not get injured from falling or hitting the equipment.

Rose went down doing what she wanted to do, not sitting around safe and bored.

Rose got back up and had the guts to continue practicing with the team until tryouts. No, she did not make the team. Still, I believe it is important to be brave enough to risk the bad and look for the good when it comes.

This is why Rose is Rose. We got out of her way. We did not let fear call the shots.

It was not easy. It is still not easy. But it is necessary.

Mama Flow

Status at Softball Practice

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.

Under the Umbrella

I carry this umbrella twenty-four seven. You never know when it might rain.

It is difficult to see the sun, airplanes and puffy clouds, but one never knows when a storm may show up. It is best to stay undercover.

I can go to the fair, but I cannot ride the rides with this umbrella. I have never ridden a Ferris wheel or a roller coaster. No umbrellas allowed.

I would love to learn to ride a horse, but it would be difficult to hold the reins and the umbrella at the same time. I guess that goes for riding elephants and camels, too. Bummer!

I want to canoe across the lake, but I cannot paddle while holding this umbrella. So I stay on the shore and watch others journey across. It looks like fun.

I have seen the ocean, but I cannot swim in it because of the umbrella. The waves might knock me and the umbrella down. The ocean is so unpredictable.

I would like to race go carts, but the umbrella will affect my steering. I might wreck driving with one hand. It is too dangerous.

One never knows when it might rain, so it is best to always be ready. Staying dry is very important. This umbrella is my protection.

PARENTS:

If seizures were rain.

Would hauling around a cumbersome umbrella really keep your kid dry(safe)?

Mama/Dad are you an umbrella?

What is a fear of a seizure preventing your child from doing?

Fully living?

Is it worth it?

Umbrella Mama

Not Being There

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

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