Our family had the tradition of staying on the same two beautiful islands during vacation each summer. These two destinations were adjoined by a bridge. We either rented a house on one island or a first-floor condo on the other. Both locations were on the beach. My parents could watch the ocean from the porches.
This particular year we stayed in the usual condo. There was an adjacent lawn with plenty of play-space off the patio and a nearby pool. It was the perfect location to easily keep track of two young children.
We were in the middle of a family ballgame on the lawn when Rose suddenly stopped playing and walked determinedly toward the condo.She stepped inside and immediately laid down on the couch in the living room. The couch was under an air conditioning vent. Her chin began to quiver and twitch as her face darkened. Her torso was hot, but her limbs were chilled. This seizure was about ten minutes long. We wondered what conditions may have brought this on. Was it not taking a nap? Getting too hot then too cold? Maybe the dosage of drug 2D was too low? This was the constant guessing game we played after each seizure. Why now? What caused it? What should we do differently?
When we returned home a blood level of drug 2D was taken. Rose’s dosage was increased.
Seizure Mama speaks to parents:
What caused this seizure? Epilepsy is the obvious answer. We seemed to ignore the elephant in the room over and over. It amazes me how we kept questioning the cause of each seizure like it had a new source. Yes, there were triggers that promoted the onset. We suspected that rapid temperature changes were a trigger many times.
You cannot keep your child in a bubble. Get out of the house. We spent a lot of time on the floor in public places. Me sitting beside my unconscious daughter and wishing we both could become invisible. Wishing we were someplace where scared and puzzled folks couldn’t stare at us.
So how would we prevent this? Stay home waiting for the next seizure. Avoiding any stimuli that might be a trigger. Is this an appropriate life for a little girl? Her parents? Her brother? Hiding and waiting?
The seizures will come whether you are hiding at home or enjoying an outing. Pack a bag of seizure supplies. Put your child in a cute helmet if necessary. Go out and have a life between these damn things.
THEN and NOW will be posted on Wednesday June 2, 2021
I was reminded by one of my other mothers how I felt
when IT came back.
A seizure happens after a long seizure-free spell.
You are thinking that IT has finally left her alone.
It throws her down while you are not there.
She is injured, you are shaken.
At some point we have accepted that IT will be back.
We will not let it steal the time in between.
We will do what we want and be who we want
until IT returns.
Getting back up is the most important part.
IT will NOT keep her down.
Attached is the post I wrote when Rose had her first seizure while away at the university. I was sad and angry and scared…
When Rose was in eighth grade band, the middle school band was invited to join the high school band to play during a football game. Rose sat with all the other trumpet players in the band section of the stadium.
Rose’s father and I sat in the adjacent section where we could keep an eye on her. We were concerned because Rose hated loud noise. We had instructed her to take out her tiny hearing aid while the band played. This hearing aid was red and the size of a kidney bean. It cost thousands of dollars and was not covered by insurance.
At some point during the first half, we noticed a disturbance where Rose was sitting. She was having a seizure. I rushed down to her side. The band director gave the other band members the okay to go take a break. This made it easier for the EMTs to get to us. Rose stayed unconscious for quite some time after the seizure. Her dad went to get the van and drive it up to the back of the stands.
It was about then that I noticed that Rose’s hearing aid was not in her ear. I searched around her. There was no little red bean. I went through her pockets. No bean. The EMTs joined in the search. We made quite a spectacle. Unconscious Rose, her mama, and a bunch of men in uniform scouring the empty stands.
The band members returned from their break. The band leader asked if I minded if they played some music. The music resumed. Rose aroused. A group of men helped haul Rose up the stadium steps to the van. As I followed them up the steps, a woman tapped me on the shoulder and asked “What were ya’ll lookin’ for down there?” She was curious about the lost item, not the unconscious girl. I guess asking about Rose would have been rude.
When we got Rose safely into the backseat of the van, I informed her dad that her tiny hearing aid was missing. I searched her pockets once more. Tucked down in the corner of her jacket pocket was that tiny expensive bean. I was so relieved and happy.
As we drove away from the school, Rose’s dad turned to me and asked, “Other than that, Mrs. Lincoln, how was the play?”
Seizure Mama speaks to parents:
It may be futile to try to keep your child’s seizures a secret. Rose’s condition was known to everyone at church, at school, and out in the community. We never tried to hide her epilepsy. There was no point in it. It went with us wherever we went, whether we liked it or not.
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.
I know it is only
a matter of time
before I must ride
the Lightning bull
at the Hades Rodeo.
I will be twisted and turned
then thrown to the ground.
I hope that some clown
will stand over me
while I’m down
to save me
from being stomped
before I can get back
up on my feet
at the Hades Rodeo.