Adding Dates to our Stories

I want to make sure that folks who find us know that these events are NOT in real-time.

Our book is to give others hope NOT make them sad.

From now on, I will include a month and year with each story.

Rose is doing GREAT at the university and has decided to triple major.

We are pleased and proud of her.

Flower Roberts

 

Story # 21: The Painful Appointment (May, 2002)

We had felt good about the first neurologist in the beginning. The doctor was observant and thoughtful. We had previously left each of our appointments with several written plans of action in case the first option did not bring the results we hoped for. If plan ‘A’ did not work, we also had plans ‘B’ and ‘C’ if needed. 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 and 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 nurses. The doctor mentioned wanting another EEG(electroencephalogram) and mentioned the possibility of 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 regimen and headed for surgery. Our instructions were to stay on drugs 3S, 4L and 5Z. Stay on these three drugs? 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 with these same drugs and dosages. We left the appointment 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? This was unacceptable and infuriating.
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 finished their appointments before the lunch break. It was interesting watching the other struggling families while we waited. The parents were anxious while the children were bored and restless. One father was irate and loud about a mistake that was made by the receptionist.
Finally we got to speak with the doctor again, and before we left we had a new plan. I had the doctor write it down. I still have the paper. Rose was to go down on 4L, off of drug 3S go up on drug 5Z and add a new drug 6K. Was this a plan or a punishment? This was like playing a game of roulette using strong drugs on a young child. Was this new plan better than no change? It gets worse from here.

Seizure Mama speaks to parents:

You must be politely proactive. Although different dosages and a new drug made things worse in this circumstance, sticking with the same regimen would have prolonged the process of finding the right combination. Months later we concluded that 4L was the drug from hell. We never found the therapeutic dose. The effective window was so small that we shot past it and Rose eventually went toxic on this drug combination.
Keep good records and write down everything. Things got so bad that I couldn’t think straight. I was a wreck during these months. We felt damned. Maybe you know how that feels. God help us all.

Epilepsy Again

We thought we were done…but we were wrong.

Story 13:

Rose made it three years without a seizure. An EEG(electroencephalogram)was done. It was normal. She was weaned off of drug 3S during the summer. She grew taller, quicker, and smarter. We felt epilepsy was behind us. We believed the seizures were due to all those ear infections and fevers. Rose was growing and thriving. We were all relieved.
Rose started third grade without much worry. Everyone involved with her care knew her history. As a precaution, Rose’s medical information was shared with her new teacher. This young woman was very funny and enthusiastic. Rose’s classroom was near the office. Rose was happy.
We were all getting into our own grooves. Our lingering fear had loosened its hold on our family. I restarted my garden art business and began scheduling shows. My son was now in middle school leaving Rose at the elementary school without her big brother. No worries.
In mid- November, I had a two-day art show in a neighboring town about forty-five minutes from Rose’s school. Anytime I was away from Rose I wore a beeper and carried a bag phone. I can confidently say that her father and I, both at once, had not been this far from Rose since her diagnosis five years ago. Anytime I was away from her I wore a beeper and carried a bag phone.
The week of the show, Rose got another ear infection. She had hoped to go to her first sleepover at a friend’s house just across the road from our home. I was preparing for the show. Everyone was busy, too busy.
We kept Rose out of school on Thursday to recuperate and rest. She seemed to feel better. Friday morning was frantic. I gave Rose some over-the-counter NSAIDs(non-steroidal anti-inflammatory drug) and her antibiotics. I also sprayed her nose with a sinus spray as her ear specialist had recommended. We thought we had covered all the bases,but gut was still screaming. This was too much at once; the two-day show, the sleepover and especially being far from Rose.
My husband and I delivered our two children to their separate schools. Then we headed to the town of the art show in separate vehicles. He was to help me unload my heavy pieces into my booth and immediately return home. As we were unloading my garden art, my beeper went off. I looked at the tiny screen. It displayed the number of Rose’s school with a 911 at the end. This was our agreed-upon signal to drop everything and run. I am so thankful we had this signal in place. I explained to the artists in the booth beside me that we had a medical emergency. They assured me that they would pile my art under the table and cover it. We jumped into our truck and my husband drove as I called the school.
Our friend in the office answered the phone. He said “It’s Rose. Get here quick.” I explained that we were headed up the interstate, but were forty minutes away. Our hazard lights were on and I was waving a white sheet of paper in the windshield. Still some people refused to pull over into the right lane. At one point we passed in the grass and lost a hubcap. The beeper kept going off. The calls kept coming: “What hospital do we take her to?” “How far away are you now?”

My one question was ”Is she still breathing?”

Seizure Mama speaks to parents:

Let’s play a different version of the terrible game we parents play, “Second Guess Yourself.” Only this time let’s change it from ‘What if I had…’ to “What if I had NOT…?”

Examining the events described above, what if I had NOT…

1. …let Rose’s teacher know that she had epilepsy.
2. …set up an alert system including beeper and phone. (This occurred before cell phones.)
3. …left an emergency bag in the office with emergency medications in it?

If I had chosen to hide Rose’s seizures to avoid the stigma, would she still be here?

The Art Stayed

Rose was home bound several times during her twelve years of public school.  It was during these periods that we saw her academic struggles up close.

She would go from knowing her multiplication tables to not remembering them, but the art stayed.

Rose could spell words one week and forget them the next, but the art stayed.

She would read a story and forget the names of the main characters, but the art stayed.

When everything else seemed to be flushed from her brain by seizures and side effects, she could still mix a perfect flamingo pink paint and create beauty with her shaky hands.

There were times when we gave up on academics and just did art.

When nothing would go in, the art still came out.

Her teachers were understanding through these roller coaster rides.

When she was stuck in the Epilepsy Monitoring Unit for days at a time, Rose made hotmats. She asked the healthcare workers which colors they wanted and custom made them for people. It was a great way to keep her busy. The nurses and staff thought it was super cute.

When the academic struggles get to be too much for your child,

draw their spelling words, make a math collage, make up a story…

Sometimes it is better to pause than to pass.

Seizure Mama speaks to parents:

I am a former teacher. I knew how important it was for Rose to not fall behind in school.  I also knew how unimportant it was for Rose to fall behind in school.

While she was home bound in grades 3 and 4, her teachers and I refused to frustrate her by pushing the curriculum. One of her teachers said it was like trying to teach a blind person colors.

We worked to keep her moving forward in any way that worked. Art always worked. It was also a way to reassure all of us that Rose was still in there, through all the seizures and side effects.

They could have been terrible times, but we did not let them be terrible. Sometimes you have to let go of the agenda and go with the flow.

Seizure Mama/Flower Roberts

Epilepsy Blog Relay Post: June 23, 2019

 

 

My Hobby and My Mission

My hobby gives me so much joy.  It comes naturally to me. It’s easy.  It’s fun.

It is gardening.

I have chlorophyll in my blood. I come from a long line of plant people.

I love gardening and I love blogging about my garden.

My mission, on the other hand, is hard.  It causes me sorrow.

Twenty-four years of taking care of Rose while waiting for the next seizure or side effect was difficult.

Remembering these experiences is painful.

Writing about these struggles sends me back in the trenches.

Why do I do it?

Because I know how it feels to fight a losing battle; day after day after day…

I know how it is to feel unlucky, cursed and damned.

I can’t stand thinking that other mothers are doing it alone.

So I will stay the course.

Sending out a beam of light to a mama in her darkness.

Hang on Sister!  Flower is here.

Seizure Mama/Flower Roberts

Story #34: Down in the Band Room

When Rose started to middle school, Mama went, too. There was an eighth grade science teacher opening which I applied for and got. There was a collective sigh of relief from all of our family and friends. The middle school was too far away from our house. I could not get there fast enough if there was an emergency. The route there was all two lane roads. What if there was a tractor, a train, a wreck…?
So Rose’s mama went to middle school. It was a good thing I did. There were sicknesses and seizures that had to be dealt with. The entire staff knew that Rose’s mama was only an intercom call away. I would hear my name followed by “Get to the gym.” or “Go the nurse’s office.” I would take a deep breath and run toward Rose as someone met me in the hallway heading toward my classroom to watch my students during my absence.
Adjacent to my classroom, I had a storage room for science equipment. We kept a fold-out cot with pillows and blankets in it for Rose to sleep off her seizures after being rolled to my room in the closest available rolling chair. It was a comfort to Rose and me that I could peek through my back door and check on her without missing a beat teaching my students.
This is how we handled her emergencies during those years. We were still searching for the perfect combination of medications. She had some learning issues and hearing issues. Then there were several surgeries. Rose needed support. I was the “mama in residence” again, there to make sure she was taken care of.
On a particularly hectic Friday, I was called over the intercom to the band room. There was a band concert. Rose played the trumpet in it. I ran to the band room to find her unconscious on the tiered floor among scattered chairs and music stands.
(Please pause here to envision this setting. A stair step type floor plan, rows of chairs on each level and tall, black, metal music stands everywhere. Lord, could we not have this seizure somewhere else?)
Two other staff members stayed with us in the band room until Rose woke up. Instead of her normally docile self, she woke up swinging. I could tell she did not know where she was. Sometimes she is blind after a seizure. I kept trying to talk calmly to her, but it was as though she did not recognize my voice. I tried not to panic as several music stands were knocked down, which caused more to fall. There was a domino-effect. More crashed to the floor. It took quite a while to get Rose calmed down. The band students were waiting outside the door. They needed to put their instruments back in their cases. It was time for school to let out. They needed to come in and get ready to go home.
Rose’s dad and brother came to help us. I made a call to the our neurologist. Drug 8K dosages would be increased. No one lost her head. The show must go on.

Seizure Mama speaks to parents:

I was very fortunate to get to work at Rose’s school. It got us through those years. They were not easy for any of us. I was a trained high school biology teacher with community college experience. I would not have chosen to teach middle school. I loved my students and my peers, but the stress slowly took its toll on my health. I knew this was not going to end well, but I had to make it through seven years.
The high school was right across the road from the middle school. If I did not get a job there when Rose went to high school, I would just remain the sentry across the street, only a phone call away and a quick drive across the road. The drive over would be followed by a panicked run to a designated location. I could endure seven years in eighth grade to save Rose. I could do that. I thought…
So what does this mean to you? There will be many sacrifices made for your fragile child. Do not let your own health be one of them. I lived through my time in middle school, but damage was done. I am better now, but there were times when I was truly terrified for my own well-being. I am very protective of myself now. I have to survive Rose’s seizures, too. Rose needed me whether she liked it or not. We were tethered together by her epilepsy. If one of us went down, we both went down.
Take care of yourself, too. United we stand.

Blog or Bottle?

I used to feel like I might as well write my Seizure Mama posts on a note,

put it into a bottle and toss it into the sea.

But I knew better than this, so I have to share a story with you.

My other blog, floweralley.org, was a slow starter. That was almost four years ago.

I kept posting to myself for months.

I pretended my best gardening buddy was out there waiting to hear what I was planting.

I pretended they needed to know how to plant and tend their gardens.

I pretended that somebody out there needed me.

Then it happened, ever so slowly.

There were real gardening buddies waiting. They appeared from everywhere.

Every day I shared numbers and locations with my family, when they got home from their busy lives. I mattered. I was a gardening somebody. I was not alone.

Now, there are hundreds of followers.  I know them. I love them.

Now,  “The Flower” hums along with likes and comments. I hear from friends every day.

I am telling this for those of you that I follow who only have a double digit of followers right now. (Seizure Mama only has 16.)

DO NOT GIVE UP!

I read your words. You are saying something important. Really important.

Way more important than gardening.

You are doing a good job. I am sincere in this.

I am older. I have been where you are.

It will get better. You will get noticed.

Folks will hear your words, if they are true and heart-felt.

If I am following you, I consider your posts are worth my limited time.

No bottles needed.

Keep posting Amanda, Yaelle, Laura, Alec, Charlotte, Maria, Emma, Kevin, Clare, Dave and David.

(If I left out your name, forgive me. I haven’t finished my coffee yet.)

We are a team. Epilepsy people need us. We got this!

Everybody’s Mama/Flower