I have seen that elephant.
The one that nobody wanted to acknowledge.
The one everyone is now talking about.
I saw it over two decades ago.
In my carport.
I will never forget it.
Its name is SUDEP.
I chased it away by beating on Rose’s back.
I thought she had aspirated vomit.
I threw her four-year-old little body across my knees
and beat on her back. It was a hard beating. I was afraid.
She was blue. She was not breathing. Was she dead?
Her seizure had marched across her whole body.
That seizure parade took over 45 minutes.
The elephant came at the end, instead of Santa or a firetruck.
When I laid her on the floor of my van to start CPR,
a deep breath entered Rose’s chest.
The elephant left us.
That was her first ever non-febrile seizure.
The elephant was Epilepsy’s welcoming committee.
Now everybody knows to look out for it.
There was quite a crowd in Rose’s room at the ER when we arrived. We learned one of our good friends from the school had ridden with her in the ambulance. This was a relief to me because I did not want Rose traumatized by waking up in an ambulance among strangers. Her teacher, Ms. S soon arrived with her usual dramatic flourish. She had us laughing within minutes. Ms. S admonished her little “Turkey Toes” for leaving class early. Another friend who happened to be volunteering as a Rainbow Reader in the classroom next to Rose’s came to check on us. I stepped out in the hallway to cry with her. She knew how hard this had been on our family in the past and understood what this meant to our future.
I took notes about everything that was done on the backs of the forms and envelope from my art show. My notes were a mess by the end, crumpled and tear stained, but I was thankful that we had that paper. Things happened so fast and needed to be written down. When Rose’s dad or I left to go to the restroom, the other took over the note taking. We learned to do this in the beginning. That way her parents and caregivers all stayed on the same page in terms of her treatment.
A male nurse blatantly asked me why this seizure was so upsetting to me. I started to explain that we had hoped that Rose had outgrown her childhood epilepsy. He flatly stated that epilepsy is not something that can be outgrown. A kick while you are down is never a good thing. I will always remember his name and his face.
I know this nurse was puzzled by my extreme sadness when Rose’s medical chart clearly stated she had epilepsy. This is the same hospital where she went had gone status after her tonsillectomy three years earlier. The details were all right there for her doctors and nurses to read. I am sure I was expected to be a seasoned seizure mama by this point. I am not sure there is such a thing.
Seizure Mama speaks to parents:
What was not in Rose’s charts was how much we wanted to believe epilepsy was behind us, the seizures, the drugs, the side effects, and the fear. That’s not something medical workers can read in charts. They do not see the full picture. The quick parade of patients does not allow them time for reflective thinking. I know that those handling constant emergency situations have to think quickly on their feet.
It reminds me of my years as a teacher, when I had so many children I didn’t know what to do. I was never enough at school. Then I would come home feeling too exhausted and stressed to be a wife and a mother. I respect the workers on the front lines at the hospital. But they, like teachers, cannot know all the details.
That said, no one can expect to be handled with kid gloves in the Emergency Room. We have been there many times. The medical workers gather data, assess the current situation and decide on an immediate treatment. This is “life in the fast lane.” We parents must pay attention, write everything down, and be nicely but firmly proactive.
I have been reading books about publishing books.
Sometimes I want to throw up my hands and run back to my garden.
More time and effort is needed than I want to invest.
But this is not a vanity memoir.
This is not just Rose’s story.
It is the story of our family navigating the epilepsy journey together
and coming out the other side whole.
I know folks that need our stories which mirror their own.
I will keep struggling to maintain a balance between our present and our past.
We know there is someone out there that needs us.
We will hold fast for the long haul
and stay the course.
So our stories will keep coming.
Slowly but surely.
Seizure Mama/Flower Roberts
A pregnant woman eats for two.
That is important, but not as complicated as remembering for three.
I spent the last four days with my family.
This included my daughter, Rose, and my mother.
We can be called forgetting, forgetful and forgotten.
My mother is 87. She is forgetting the present. Her past is perfect.
I am 52 again. I am very distracted by life. I am forgetful.
Rose has spent most of her life on anti-seizure medications.
Most of those drugs did not stop her seizures, but did stop her memory.
Much of her childhood is forgotten..or remembered incorrectly.
It is hard to be me…remembering for three.
But we have each other right now. We have now.
That is worth remembering.
We thought we were done…but we were wrong.
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?
Rose enjoyed her year in kindergarten. Her first grade teacher was a delightful, experienced woman. I was the volunteer Rainbow Reader for Rose’s classroom. I enjoyed my time in her room with the students. I went to her class each week and read books out loud to her class. There was always a lot to do in her classroom. The teachers in early grades were expected to assess each child individually. This meant that support was needed for those weeks as the teacher performed the one-on-one assessments with students. I was a certified teacher, so I understood this and was glad to help.
Rose was a good student and an advanced reader. I am not sure whether she was making progress during this year or succeeding due to former learning. We did notice that her hands were shaking when she tried to do certain fine motor activities. Her crayon coloring did not stay inside the lines. Her drawings were sloppier than they used to be. She also had some hearing difficulties. Her hearing was tested and accommodations were made. When some test results came home saying she had reading issues, I had her retested with the evaluator sitting on the side of her “good ear.” The second test results were improved.
Second grade got much more difficult. Because standardized state testing began in the third grade, the second grade teachers were expected to prepare their students for this upcoming year. Rose had a hard time keeping up. The math quizzes were timed. Missed problems were to be worked out and copied over at home. Missed spelling words were also sent home to study. Rose became very frustrated fast. The timer made her nervous. I was not sure she could hear the spelling words. Things were falling apart.
I did not realize how bad things had gotten until report cards came out. It wasn’t her grades that concerned me. It was her tardies. Every morning her brother and she were let out of the car at the same time. He would get to class on time, but she would be late. When I asked her about this, She explained that she stopped to get water, or peek into the library, or walk by her former classroom. In other words, she wandered around the school until the bell rang. This was not safe for her. It was also a sign of her dreading to go to her classroom.
I understood Rose’s frustration. We were struggling with all her “re-do” work at home. But as a former teacher, I knew the pressures Rose’s teacher faced in pushing her students. I remembered Rose’s neurologist warning the we may need to adjust our academic expectations. The drugs were slowing her down, but I did not want to accept this.
I was finally pushed to consult the teacher when my wise father asked me if he needed to make an appointment with Ms.C. I requested a much needed conference with Rose’s teacher. We worked together to augment Rose’s assignments to include shorter spelling lists, and more time for math quizzes. This was the first step in accepting that our academic expectations for Rose had to be altered. It was not fair to Rose to push and overwhelm her.
Seizure Mama speaks to parents:
Pay attention to everything. Is your child happy to go to school? Does he/she finish lunch? Does he/she talk about friends? What does your child do during recess?
So many times I was alerted to problems by some random comment. It is hard to catch every detail when you are busy and have other children. Pause often and try to picture what your child’s day is like. Listen for clues. I still do this when Rose calls home from college.
Rose and I started kindergarten together. The first two weeks were half days, so the teachers could make home visits in the afternoons. Our plan was for me to stay with Rose at school until her teachers came to our house for the home visit. They knew this plan and could have scheduled our home visit earlier. Rose and I were both known at the elementary school because Rose’s older brother was there. I had been involved in the Parent Teacher Association and volunteered often.
I will always remember those two weeks of constant action. Rose’s teacher and assistant were both amazingly patient and pleasant women. There was constant activity every minute of the day, even during nap time. I found it exhausting, but very entertaining. I felt really good about Rose being with these two women. I knew, despite their many responsibilities, they would take care of Rose as best they could.
The day of the home visit arrived. Rose served her teachers brownies and lemonade. We talked briefly about funny events that had occurred during the first weeks of kindergarten. Rose was happy to have her new teachers in her home.
They both sat on the couch as I demonstrated how to handle a seizure using Rose’s large stuffed cow, Lovey. I described how a seizure might start and then placed Lovey on her side. I opened Rose’s big red seizure bag that was to stay in the principal’s office. I put a rolled towel from inside it under Lovey’s head and pulled out Rose’s emergency medication and pretended to administer it to the cow.
After I finished the demonstration, I looked into the teachers’ faces and waited. Would they handle this for us? Could they do this? Were they willing to take this on? Most importantly, was I going to have to spend the year in kindergarten?
They looked at each other. Then looked back at us. Ms.J said, “We can handle this.” I couldn’t believe what I heard. Just because public school is obligated to make accommodations does not mean they gladly do it. Ms.S said they both knew how to handle seizures. One had a husband who had epilepsy, the other had seizures herself and was taking the same medication as Rose was. The principal knew all this. That’s why he put Rose in their classroom. I felt so blessed to have these two women be part of Rose’s team. What a relief and a gift. I will always be grateful to these two wonderful women.
Seizure Mama speaks to parents:
A “seizure bag” went wherever Rose went. In it were several towels, a change of clothes, wipes, paper towels, and a bottle of water. Her emergency medications came in packs of two syringes and were somewhat expensive. One was kept in the big red bag at school, the other one in my purse. These emergency drug syringes could not be left in the car. The drug could not get too hot or too cold, so the syringe stayed with me. This meant that I carried an over-sized purse for years. I rolled the sealed syringe in a bandanna scarf to protect it inside my cluttered purse and used the bandanna to cover Rose during a seizure. This is how you live with epilepsy on the go.