Things fell apart. Drug 4L had been added to drug 3S after the seizures during the holidays. At first drug 4L made Rose mean. Getting her schoolwork done was a battle. Either she would not or could not concentrate. Were these changes due to the new drug, the new home bound situation, or the seizures? Her ear infections continued, so antibiotics were frequently in the mix.
We kept records of all her drug dosages and combinations, along with seizure descriptions on a chart. We couldn’t keep all of it straight unless we wrote it down. The months were a blur of seizures, side effects and sickness. I read books about epilepsy and researched epilepsy drugs and treatments. It was all so confusing. How could we help our Rose if we did not understand this disorder and the effects of its medications? I felt helpless and hopeless. Rose was changing as her drugs changed.
Appointments with the neurologist became very frustrating. The partner of the practice had left, so our doctor was handling a double load of patients. We used to feel like there was a set plan for Rose’s treatment; now it seemed like one long experiment. The doses for drug 4L kept increasing and we saw nothing but side effects. Her seizures became longer and stronger. We must have missed the window of effectiveness for drug 4L. Finally it was dropped and drug 5Z was added to her doses of 3S. Experimenting with the wrong drugs and dosages went on for months. Every few days, Rose would have a long, strong seizure. She would spend a day or two recovering before another seizure knocked her back down. I did not leave her anymore. I was too scared.
Sometimes on the weekends when Rose’s dad was home, Rose’s brother would ride the trails through the woods around our house. I would go with him carrying my camera and a walkie talkie. If a seizure occurred, her dad could call me to come back. I would hike through the woods and allow myself to cry. This was the only time I would leave the house. I walked the paths in our woods relieved to be out of our sad house where the walls kept closing in.
I never let Rose see me cry. We did not want her to see us saddened or scared. We were losing her. Her essence was disappearing. She was a groggy, foggy, tired mess. The drugs were not helping anything. The seizures were wearing her down and the drugs were ruining the time in between them.
Seizure Mama speaks to parents:
I am ashamed to look at the records from these terrible months. Why did we not get a second opinion sooner? Why did we not demand to go to an EMU? The awful reason was that we thought going to the EMU was a big step toward surgery. I had read about the different surgeries that were used to stop seizures. I wanted to give every drug a full chance to work. When I look back at her charts of medication combinations now, I am horrified.
Drug changes were being made frequently and almost in a random fashion. I think the neurologist was on overload and was pushed to try things because of my constant calls and letters. She was seemingly experimenting with various possible remedies.
It took the terrible scare of Rose going toxic for us to decide that enough was enough and seek a second opinion from a different neurologist in a different city. That was a turning point for us. Don’t wait that long.
I have an unwanted ability to time travel.
Sometimes I get jerked out of the present
and return to a scene from the past
that I did not want to be in the first time.
Feeling the same fear over and over again.
I want to learn a new trick with this magic.
I want to travel forward into the future
and come back and tell my scarred, scared self
that everything is going to be all right.
Until then I will hang on to hope.
Rose called to ask if she could go on a trip with friends.
My fear wanted to say “No.”
My mind was thinking: it is too far away, it is a strange place, I do not know these friends…
I kept my lips silent.
I will not share my fears with Rose. She fights her own fears.
We must be brave, Rose and I.
Caution is smart, fear is stupid.
Caution says maybe, but fear says no.
Rose has heard enough “No’s.”
I will not let fear speak for us.
I will not say no.
I will let Rose go
on her first trip with friends at age 26
to a new place far away from her mama.
It is time.
Rose is ready.
The day after the seizure in the movie theater, the speech therapist from Rose’s elementary school called to set up a meeting about starting speech therapy. Rose needed this due to her hearing loss because of her many ear infections. I told the therapist about the seizures over the holidays and asked if she could get the principal to call us about Rose going homebound. The principal called back shortly thereafter.
I had been a public school teacher before my two children were born. I knew that having Rose in a busy classroom would not be safe for her if she continued to have frequent full-blown seizures. Elementary classes are a flourish of activities. The students move from place to place like a herd of little ducks. It would be all too easy for a teacher to accidentally leave Rose behind or not notice she was on the floor. In addition, I feared the stress and exposure to germs would disrupt the delicate balance we were trying to achieve with Rose.
The principal told us which forms must be filled out by Rose’s doctors. We got these and had them completed by her neurologist, but I still felt uncertain about pulling Rose out of school. I asked the neurologist what would happen if Rose had a series of seizures somewhere alone and nobody noticed. Her doctor plainly stated that she could die. There was no more debate. Rose would not be safe in a busy and bustling public school. We could not take the risk.
This was the right choice to make. The seizures kept coming, strong and frequent, during the next months. We tried many new drugs and drug combinations. This was the worst stretch so far. Not only did Rose keep having seizures; now there was also a parade of side effects to go along with them.
Seizure Mama speaks to parents:
Do not assume public schools will be able to make proper accommodations for your child. Sometimes it is just not possible; a school may not have enough trained staff or funding. You can get angry and fuss all you want. Sometimes it cannot be done, even if it should be done. Your child is ultimately your responsibility. Do not push this important and complicated task onto some overworked and underpaid teacher with a classroom full of other children. It will not be fair to the teacher and may endanger your precious child. Life is NOT fair. You should know that by now.
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.