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.
Please forgive me, but I must step away as Seizure Mama for a break.
I have been pushing too hard. It has taken its toll.
It was hard enough loving one person with epilepsy.
Now there are dozens of you. Your stories, your sorrow…
I could not stop crying this morning… this afternoon…
So I am going to step back and just be Flower the garden blogger
just for a week or two.
You know where to find me.
I was involved in all the activities Rose was involved in. Rose went to Sunday School, so I taught a different Sunday School class and was part of the Christian Education Committee. Rose went to Bible School, so I was in charge of the crafts. Rose went to elementary school, so I volunteered as a Rainbow Reader and PTO grade coordinator. When Rose joined the Brownies, I became an assistant leader. We were tethered together by the epilepsy. We kept going because she kept going.
When the seizures started coming frequently Rose quit going, but I was left with all these responsibilities. I wanted to stay home with Rose, but I had to attend each organization’s meetings and events. I had to go on without her. I tried to keep up with my various leadership and supporting positions. This meant my going everywhere alone. I went to school with no student. I went to Brownies with no Brownie. I attended church with no little churchgoer Rose.
The absurdity of this became all too apparent when I had to step over my unconscious daughter to go to a Brownie meeting. I had arranged for my friend, a dental hygienist, to come to teach lessons on dental care at this particular meeting. I felt obligated to attend. The girls were to earn Dental Care badges. I went to Brownies to be with the daughters of other mothers while my daughter stayed home with her dad.
Rose arrived at the meeting later all crumpled and squinting, determined to get her Dental Care badge and eat her snack. It seemed ridiculous for her to be here among all this noise and activity while looking like she needed to crawl in a hole and hibernate. This event was the beginning of my shedding some “mama obligations” in the community.
It was hard to pass these torches to other mothers. Most of them worked. I had all ready shut down my garden art business again when the seizures started back. Now I could not find people willing or able to replace me on my various committees and in my volunteer positions. No one stepped up to take over my volunteer jobs; it was me or no one. I had to drop a few balls and leave the teams. Family came first. When the seizures were at their worst, all the other things did not matter anymore. I was just a mama, and falling short at that.
Seizure Mama speaks to parents:
Remember why you do what you do as a parent. If the activity is not important to your child, give it up. Signing up for many extra activities will only frustrate you both. Do only what you both enjoy together. Let your child choose. It’s their childhood.
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.