I have finished the book about Rose and me.
I have put all our stories down with the lessons we learned
while trying to balance a mean disease with a good life.
Now my goal is to find others who understand what it is like
to sort through the drugs and side effects to find the best mix.
Those who strive to live a happy, healthy life between seizures.
I am pleased to find strong, brave and optimistic survivors
not only carrying on but sharing their stories in real time.
You are everywhere.
Young folks like Kevin( Kevinskick) in Ireland, Laura ( Shake It Off; Living with Seizures), Alec (Seize and Destroy) and Yaelle ( Epilepsy at 23) in Israel are sharing their struggles.
Parents such as Clare of E-word and Dave of Epilepsy Dad are telling how they help their children.
Then there are the parents who send comments like Lee Ann and Khadija that keep me going when I want to quit.
ALL of you inspire me to be stronger, braver and better.
We are a community. Brought together by a relentless disease.
You make me proud.
It had been our tradition to go see a movie each year over the Christmas break. Since Rose had experienced numerous seizures over this two-week holiday, we postponed our movie outing until the last Saturday before school started back. We had been looking forward to seeing Monsters INC, so my sister and I took Rose and her brother to a nearby town to see the matinee.
We chose seats about midway up in the theater and Rose sat beside me. She seemed to be enjoying the movie until the mean, disappearing lizard scared the little girl. When Rose got scared in movies or on amusement park rides, she had a habit of biting my shoulder. Lucky me. Rose leaned over to bite my shoulder during this stressful scene and the bite turned into chewing. When I looked down at her, I realized Rose was having a strong seizure. I picked her up and carried her to the end of the aisle and started down the steps in the dark. My sister and Rose’s brother followed. I sent my sister back up the steps and down the aisle to get our coats.
One of Rose’s stiffened legs got caught between the bars of the step railings as we descended them. I had to back up and maneuver her leg out, then carry her, still seizing, out into the lighted hallway where I placed her on her side and covered her with my coat. I administered her emergency medication and sent my sister and son to get help.
After I finished administering her medication with the syringe, I looked up to see a mother with her two children watching me. The little girl looked terrified. I put on my brave face and assured the scared girl that Rose would be fine in just a little while. The family hurried on down the hallway. The little girl glanced back at us, and I gave her a reassuring smile.
About this time, two young men who worked at the theater arrived with my sister and son. One had a radio and was communicating with the manager of the theater. I told them that the seizure was over, but I needed help getting Rose to our van. I gave my sister the keys to pull the van up to the entrance.
These two boys stayed with us despite the calls from the manager to return to the front. One boy carried Rose. The other helped carry our coats. The boy carrying Rose carefully strapped her into her seat and shook her hand and wished her good luck. The two boys stood together on the sidewalk and watched us drive away.
On the drive home, I learned from my sister that one of the boys had epilepsy. The other had a mother with epilepsy. They were not going to leave Rose until she was safe. I will always consider them angels who came to help when we really needed it. Another miracle for Rose.
Seizure Mama speaks to parents:
This event added another fear to our list. We have not sat in the middle of a movie theater since this. We now sit in the second row on a side aisle. When Rose went on field trips with school, we always sat somewhere with an easy escape route. Concerts are scary now, too, especially if the bleacher seats are steep. Considering where to sit in a crowded arena is an important consideration. Every event comes with “Ifs.”
If a seizure occurs in any given place, how will we get out?
Rose was busy playing in our workshop, which has a concrete floor. Her dad and I were both busy with our own art and construction projects. Rose was making something of her own while standing at my workbench. She suddenly seized and fell to the floor between the workbench and the sink. Thankfully there was a large, but dirty, rug under her on the floor.
The first dose of her emergency medication did not stop the seizure. We waited a few minutes and then used the second syringe. Finally the convulsions stopped and she lay still on the floor. Our relief was short-lived. We realized that we now had no more emergency medication and it was a Friday afternoon.
I called our friend at the pharmacy and explained why needed more of Rose’s emergency medication as soon as possible. Unfortunately, this particular drug was not kept in stock because it was very expensive and had a short lifespan. It also had to be protected from temperature extremes. The pharmacist explained that the drug would have to be ordered and then delivered, which would take time.
He knew, just as we knew, that we may not have that kind of time. We could be in the middle of a status situation with nothing to save Rose. The pharmacist was thinking out loud when he offered that maybe he had some of a “dead girl’s medicine” at the other pharmacy. A dead girl’s medicine? We needed a dead girl’s medicine to save Rose. I was so stunned that I hung up the phone before I started crying.
We knew that Rose’s emergency bag with more medication was in the principal’s office. It was 4:30 on a Friday afternoon, but maybe someone would answer the phone. When I called the school’s office, the assistant principal answered. She and the guidance counselor were there wrapping Christmas gifts for needy children and their families in the community. We told her what we needed and that one of us would immediately come and get the big red bag. She offered to deliver the bag to us, so that we both could stay with Rose.
Here was one good person taking her time to do something helpful. What a blessing. We could relax. The drugs were on their way. Rose would be safe now. What a gift that was.
Seizure Mama speaks to parents:
Saved by the bag again. I cannot stress this enough. You must always be prepared for a seizure. It is the only way your family can carry on responsibly and safely. You have no choice about where the seizures occur, but you can make the choice to always be prepared.
I want to add here that SUDEP or death by seizure will always be in the back of your mind if your child has the tonic clonic/grand mal type of seizures. Hearing the pharmacist offer a dead girl’s medicine, first sent my mind to her poor family and then to the possibility of Rose’s death. No one wants to have these thoughts. There is no point in dwelling on such sadness.
Yes, living with epilepsy is like living with a terrorist or a time bomb. But none of us know what will happen in the future. Your life is now, with this precious child of yours, so live it now. I call it “nower.” It means the power of now. That’s all anyone has. Live now. Whatever will be, will be.
We finally made it home from the hospital that Friday evening. Rose’s dad and grandfather headed back down the interstate in our truck to retrieve all my garden art from the booth of the show we had hurriedly abandoned that morning. Rose had been given a loaded dose of drug 3S in an IV. She slept on the way home. My parents came and stayed with me, my son and Rose so that we would not be alone after such a traumatic and exhausting day.
Rose slept for the first several hours. When she woke up and saw that it was dark, she realized that she was missing her friend’s birthday party and sleepover. She had been really looking forward to the event, even though we had warned her she could not spend the whole night. She cried about not being able to go to her friend’s house. I calmed her down and she went back to sleep. She slept in bed with me that night so I could keep an eye on her.
During the night, she woke up screaming “I want my lunch.” Rose usually packed her lunches for school and got to take a special lunch that she picked out herself on Fridays. She had awoken and realized that her special lunch had been left uneaten at school and would be ruined by Monday. She loudly repeated “I want my lunch.” over and over again for almost an hour like it was a mantra. I tried to calm her, but there was no consoling her. By the end of that hour, Rose and I were both hysterical.
I always tried very hard to not let Rose see me upset. We kept a brave face during most of her seizures. This time, I was truly scared that something had happened to her brain. I tried telling her we would get her a new special lunch for Monday, but I knew what she really wanted. She did not really want her lunch back. She wanted today back. I wanted today back, too. Rose knew she had epilepsy again. That awful nurse was right: it had never left us.
The little girl who had the party and her mama came to visit us the next day. They brought Rose a bag of goodies from the party. I always appreciate gestures like this. They mean so much.
Seizure Mama speaks to parents:
Your hearts will be broken over and over again. You must keep going. You must keep living with this enemy. You cannot let it steal your the life from you, your family, and most of all your child. Yes, it will knock your baby down, but you must help him/her right back up. Getting up is what is important.
Do not let epilepsy keep them down. Do not let it have an extra second of your lives. Epilepsy may steal minutes from days, but you can fight for the rest of the time. Make that your life- the time between. Make that time the best you can make 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.
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.
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 my 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.