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.
It has stayed in its envelope.
We move it about.
“Put is somewhere.” he says, “It will get bent.”
It is our church directory portrait without Rose.
She was away at the university.
We three went to pose for our family portrait.
But our family has four.
It is a photo of my worst fear.
The three of us with no Rose.
This photo is lovely,
but it will never find a frame.
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.
Our family took a three-week trip across the country to the Grand Tetons and Yellowstone National Park. Our son was in high school and Rose was in middle school. It was the perfect time to take such a trip. Our children were mature enough to handle the long hours on the road. I will always remember things about this trip that shaped our future. It really was a defining time for our family. There were obstacles. We handled them as a family.
We drove our truck and tent-camped most of the time. When we arrived at our first camping spot, Flagg Ranch, we got out of the truck to see the most vivid double rainbow I have ever seen. We thought we had lucked in to the perfect campsite. We had two tents, one for sleeping and the other for all our supplies. We did not enjoy a restful time here, however. First, it was hard to sleep due to a park ranger’s loud truck circling the campground all night on bear patrol. When a rain storm came during the second night, we realized that our prime site was a gully. Both tents filled up with water. We were forced to move camp in the dark during the rain. We spent most of the night in the laundry building drying our sleeping bags. Other campers doing late-night laundry let us use up the remaining time on their dryers. This was on my birthday. It was amazing. We were an invincible team.
We moved around quite a bit during this three-week-long trip. I kept hauling an especially heavy bag of Rose’s in and out of the truck. Finally, I asked her what was in there. “ My shoes” she replied. “ How many pairs of shoes did you bring?” I asked. “ seven” she said. “ Why on earth did you bring seven pairs of shoes?” I asked. Her response was “ You told me to.” While she was packing for the trip she asked how many pairs of shoes she should take, I replied “ several,” but Rose heard “ seven.” This was one of those times when we suspected that a hearing aid was in her future.
Our family toured around Yellowstone, the Grand Tetons, the Badlands and Devil’s Tower. The only health issue Rose had for most of the trip was hiccups. The hiccup spells would last for long periods of time. It was a side effect of one of her medications. Epilepsy did not show up until we got to South Dakota. We camped at Custer State Park after visiting Mount Rushmore. It was a lovely place, but nowhere near a hospital, or anything else.
Rose and her brother were riding bikes around the campground while my husband and I fixed supper. We saw our son speeding toward us alone and knew that Rose had just had a seizure.
(Pause here. We are in South Dakota, near nothing, letting our daughter with epilepsy ride her bike. Were we crazy? Were we foolhardy, negligent, stupid? No. We were living our lives. Epilepsy is like a terrorist waiting to attack. You can’t hide from it. It will come when it comes. We refused to keep sitting around waiting for the next seizure. Been there, done that.)
We jumped in the truck and drove to Rose. We hauled her and her bike back to camp. We waited for her to come to. We were concerned about broken bones. She was wearing a helmet, so probably no concussion. She had gravel in her knees. I was scared to do anything until she regained consciousness.
When she came to, we assessed the damages. No broken bones. Then it was time to deal with those knees. This part of the story always gets Rose a little mad. We had to carefully pick gravel out of her knees and bandage them. It was a painful process. She was upset with us that we had not taken care of this task while she was unconscious.
Seizure Mama speaks to parents:
We could have stayed home and waited for the next seizure. We could have forbidden Rose to ride her bike. She could have sat around the campsite watching her brother whiz past. But this is our life. Our family needed adventure and joy. We were going to live our lives to the fullest despite our fears. In those three weeks of wonder, we had one seizure and a lot of hiccups. That could have happened at home, but instead we got to see a spectacular double rainbow, Old Faithful, Mount Rushmore, a grizzly bear, and thousands of bison.
Get out there. Pack this damn epilepsy and go. But leave those seven pairs of shoes at home.
We went back to our favorite medical complex for a kidney stone recheck about a year after the initial stone was found. At that point, Rose had been off drug 6Z. She had spent months drinking lemonade made from fresh lemons. She had been through various tests for conditions that might have contributed to the stone issue. All tests were normal. The new drug 7Z was not as great as 6Z, but that is a different story. We expected the “all clear” from the urologist after this visit.
Rose and I went back to a room for the ultrasound. Her dad stayed in the waiting area to read and nap. We knew this would take a while. Rose got comfortable on the bed as she was slathered with warm gel. Another spa treatment with a hefty price tag. The technician began rubbing her wand around Rose’s midsection. I watched the gray screen of the monitor. The young lady would rub Rose as she looked at the screen and click on the keypad to take pictures and measurements. Rub and click, rub and click. Pause.
The technician excused herself to us. She returned with her supervisor. The two discussed things quietly as they pointed to the screen. They asked Rose to roll to a different position. Rub and click. Rub and click. The first young lady left and brought a doctor back with her. There were more quiet discussions in front of the screen.
About this time Rose’s sleepy dad appeared in the room with us. Someone had gone out to the waiting room to get him. We knew something was coming. More stones? Really? Making all that lemonade for nothing?
No, it was not a stone. A mass had been found on her ovary during the procedure. The bad news was, it was about the size of a tin can. The good news was it looked hollow and was probably harmless. This is when Rose’s dad and I looked at each other and laughed. Crazy right? The poor child’s parents are laughing like a joke had just been told.
Surgery was scheduled for the coming weeks. Same hospital. We hoped it was a benign mass. We hoped that the surgery would not cause damage to the ovary. There would be a big scar. No matter.
We were once again among other parents with sick children. The other children had conditions that were much more serious than a cyst. We felt blessed to be in a good place to get this taken care of. We would get through this.
Rose’s dad and I took turns staying with Rose. We would see the familiar faces of other parents in the elevators and hallways. We lugged supplies and laundry in rolling baskets and colorful luggage. You could recognize other caregivers by their luggage and tiredness, sleep-deprived sentries silently going about their duties.
Rose saw the surgeon again for a recheck before she could be released. She lay on the examining table as he poked at her incision site. There was some swelling. He opened a new pair of scissors and made a hole in the stitched line in Rose’s abdomen to let the wound drain as Rose watched with fascination. That is the kind of patient she was. Watching and learning. Patient and student all in one.
Seizure Mama speaks to parents:
You do not need to look far to find someone who has more problems than you do. Every time we went into a hospital, we left feeling lucky. Remember this if you feel the need to have a “pity party” with a stranger while in a hospital.
As I was loading Rose’s clothes and games out of the hospital, I rode down in the elevator from the pediatric floor with another mother. She was obviously moving her child out, also. We had passed each other numerous times in the previous days. I looked at her luggage and exclaimed, “Hooray, we both get to go home.” “We are headed to hospice.” was her reply.
Rose stayed home from school during the first semester of the fourth grade,since she was having several seizures per week. They were not like clockwork, so we stayed poised and ready at all times. No one ever really relaxed. Every loud sound sent us running toward it. I helped her wash her hair before letting her have a few minutes of privacy behind the shower curtain. I sat on the toilet while she washed. When the curtain opened, I wrapped her in a towel and quickly dried her hair. We avoided both hot and cold extremes, since we thought her seizures might be triggered by temperature fluctuations. The bathroom floor, which was ceramic tile, was covered by numerous rubber-backed rugs in case of a fall.
At this point we rarely left her side. She seized everywhere doing anything. When we went places we held on to her. She got in the habit of walking everywhere arm-in-arm with another person. We carefully picked where she sat. Was the chair stable and sturdy? If she fell, what would she hit? I am sure other parents were puzzled by our behavior. Observers could not see anything wrong with our lovely Rose. We must have seemed like over-protective, hover-smother parents. We got looks and sometimes inquisitive comments. These meant nothing to us. We knew we had to protect Rose from gravity. A hard fall meant a hurt face, or shoulder, or arm. She could be thrown down with great force at any second. There was no place to go where there was no gravity, so we were there to stop the falls. If the seizure/terrorist did not show up today, and we had not seen it yesterday, then it was coming tomorrow.
So we spent most of our time that year alone in our seizure-ready home full of rugs and pillows. Few folks came to visit. We did not want much company. We disappeared off everyone’s radar. It was just us, Rose, and the epilepsy, trying to get through each day safely.
The elementary school sent Rose a teacher. He would arrive in the afternoons. Our library room would be straightened and dusted, readied for his visits. The table in the center of the room was cleared and polished. The ceiling fan would be turned on low. A snack would be prepared for presentation to Rose’s guest. I would meet Mr. F at the door with a smile. Rose would be dressed and ready for her lessons.
These afternoon lessons were a blessing to me and Rose’s brother, as well as to Rose. The teacher acted as our back-up Rose-monitor. I could retreat to the kitchen to fix supper, within ear-shot. I could not discern what Rose and her teacher were saying, but I could hear the steady rhythm of her teacher’s voice, punctuated by Rose’s laughter. She loved Mr. F’s visits. Sometimes he was the only non-family member she saw during the week.
My son enjoyed these afternoons as well. He got on his bike with a walkie-talkie attached and rode through the woods surrounding our house. He knew he could be called back home if needed. Mr.F was there, so he could relax. These afternoons were a respite for him. He loved riding his bike and he felt peace in the forest. All was well during the afternoon lessons.
Seizure Mama speaks to parents:
You cannot do this alone. Being on edge every minute will poison you. It will poison your whole family. Get some support. All of you need some relaxation and rest. You are playing a long game here. Do not put your life off until this is over. This is your life now. Things may change for better or worse, but now is what it is. You all have to survive and thrive together.
These afternoon lessons let my son be a little boy for a few hours. Being a big brother is a huge responsibility when the little sister has seizures. At these times he could be free to ride fast and dream big. He would later become a mountain bike racer. He and his dad enjoyed this sport together. Those seeds of passion were planted on those afternoons when he could just be himself. I will always appreciate Mr. F for the gift he gave to both my children.
I just finished reading another epilepsy memoir.
I am amazed my PTSD did not stop me from finishing it.
It was well done and had many funny parts, but it was not useful to me.
This is my fifth memoir of this type. Only one has helped me.
The others have left me depressed and fearful for Rose’s future.
I will not be loaning these books to her.
I do not want our book to do this to our all-ready-traumatized target audience.
Our book is far from a pleasure read.
There is no way to sugar-coat seizures and stay true.
This where you come in.
WE NEED ADVICE.
I want Rose’s book to be helpful, not harmful.
I plan on asking her to add a section to stories below the
“Seizure Mama speaks to parents” called “Rose speaks to patients”
Do you think that hearing Rose’s voice after some later stories will take some of the sting out?
We want this book to help people. First Do No Harm!