Reposted Chapter 19: Just a Mama

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 was left with 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. It meant my going everywhere alone. I went to School with no student. I went to Brownies with no Brownie. I went to 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. 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 jobs. It was me or no one. When the seizures were at their worst, all the other things did not matter anymore.I had to drop some balls and leave some teams. 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.

THEN and NOW will be visceral. Whoa!

Pulling Out of the Fast Lane

THEN and NOW: Chapter 18, Rose Goes Homebound

I had always thought that overprotective mothers had issues. That assumption bit me back. I should have known better. But it is so much easier to judge than to understand.

I did not want to take Rose’s reins back. I had restarted my own life. The fear had abated. We were happy. We were all busy. We were ‘bad busy.’

I had not coined the term yet, but you know what that means. Skiing vs. swimming. Flying vs. walking. It means that we were moving so fast that we were missing things.

Status epilepticus is not something that can be missed. Rose’s seizures rarely stopped on their own when she was young. Her brain fired away until it was stopped by emergency medications.

When I was weighing the choice of school or homebound, I kept coming back to a seizure we missed when Rose was small. She was in the bathroom in the basement. My whistle was not returned. I went to find her. She was on the floor, unconscious, covered in vomit. How long had she been there like that? She was cold. She was limp. I had to clean her up, cover her up and wait for her to return.

I sat on the cold floor beside Rose wondering. How long was the seizure? How many seizures had occurred? Was she hurt? Was she whole? What was I doing that was so important?

I was now considering an unnoticed seizure sequence at school. In a bathroom? Behind a book shelf in the library? Under a table in the cafeteria? The question was not if she was going to have another seizure, instead it was when and where would it occur?

It was time to pull out of the fast lane. I trusted her teachers and the school, but this was too much risk and responsibility. I had spent a lot of time in schools as a teacher and volunteer. They are a wonderful swirls of action, movement and noise. Not a place for a silent seizure to be noticed.

I did not want to be a helicopter mother. Rose and I were tethered together again by her epilepsy. The seizures may be sporadic, but the fear is constant. We needed all eyes on Rose until we figured out medications and triggers. Education could wait.

This was not an easy decision, but it was the right one. This choice would be made another time, much later in her schooling. It was the last semester of her senior year.

Flower

Reposted Chapter 18: Rose Goes Homebound

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.

THEN AND NOW is a tornado of thought today. I will post it when my thoughts quit swirling. This was over two decades ago and I still have vivid feelings about the danger to Rose and pulling her out of school.

It is really important for me to be honest about my feelings and my mistakes. Sugar coating or pity-parties are NOT what YOU need.

Monsters and Miracles: Then and Now

One event can change your behavior forever.

I have locked my keys in my car only once in my life. That experience was so bad that I double check my keys every time I get out of my car. It was almost four decades ago. I had started my first job in a strange city where I knew no one. It happened in a bank parking lot. It took hours for a locksmith to get there and over one hundred dollars of money I could not spare. It was a hard lesson learned well.

The same applies to seating in movies and concerts. Once you have carried a seizing child down steps in the dark, you never want to do it again. I still remember the panic I felt when Rose’s leg got caught in the railing. I thought we were both going to fall down the long flight of steps to the bottom.

The other lesson I must remind myself of is that helpers come. Helpers bring hope. I am trying to retain my faith in the good of humanity even during these trying times. I must remember to be a helper. I must try to give someone else hope when they need it.

You know what it is like to feel like you are sinking.

Be someone’s buoyancy!

Mama/Flower

Reposted Chapter 17: Monsters and Miracles

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?

Facing Forward

There have been many lessons from epilepsy for my family. One of them is to keep facing forward.

Our past is too heavy to carry with us, so we learn to leave it as much as possible.

Rose seems to be carrying too much right now. There are unresolved events that haunt her. I get this. I am afraid for her. She cares too much about issues and people.

Do not judge me by these words. I am this way, too. My heart has been too open, so I avoid situations that might steal it. This is not selfish. Only other highly sensitive people get this. We must guard our psyches by isolating ourselves. If you do not understand this, then you cannot understand this.

Rose is in a sandwich between a sad past and an uncertain future. The level of uncertainty she lives with is over-the-roof compared to many. She is fiercely determined to be independent. She deserves this.

Everyone is back in their proper places today. Facing forward. Hoping for a peaceful, healthy future. Isn’t that what we all want?

Mama Flow

Mama Puts on Her Big Girl Pants

My pity party was short and sour.

I must suck it up and put on my big girl pants.

Rose is coming home tomorrow.

I must hide the elephant(fear) from her and be brave.

She is such a champ. I cannot let her see her mama being a wimp.

We have been here many times before.

I know my role quite well. Fake it ’til you make it.

Wish me luck.

Mama

The Crossing

The past has come back for a visit. Time has crossed itself.

Revisiting the past is very different from the past coming back.

Maybe it’s the PTSD talking. But I feel that I am being haunted.

I cannot write a THEN and NOW for the ‘Emergency Delivery’ chapter because THEN IS NOW.

It took me ten years to work up the courage to start our book, Seizure Mama and Rose. I took another ten to write terrible drafts. I needed to get far away from the reality to face what happened.

I do not want to be ‘Real-time Seizure Mama.’ That role belongs to Dave, Leigh Ann and Caleb’s mom. They are young, strong and brave. I am not these things. I am tired and damaged.

I just mustered up enough courage to face a past with epilepsy. Where the hell will I find the strength to face a future with it.

Don’t be mad. Don’t feel abandoned. Much has happened that I do not share.

I will be back. I do not know when.

I need to heal a bit.

We need hope. You got any to spare?

Flower

Back in the Water

I wanted to be the mother on the opposite shore of seizures, cheering the swimmers on.

But Rose is back in the water.

She had a seizure in spring after a death, another under stressful circumstances in September, then one after a shower last week. She was dazed for days. Her speech was slurred.

She says there’s a knot on the back of her head. She called EMS. She took her rescue meds.

What does a mother do when she is two and a half hours away from her endangered child?

I emailed every possible person who could help Rose. Yes, I was a pest.

I wracked my brain for a trigger. Found a suspect. More emails… more pestering.

Then I straitened up the epilepsy file cabinet, organized all epilepsy books, put four years worth of drug slips into a notebook by reverse date grouped by function.

Now what? What will I do with the rest of this fear?

Covid fear caused me to sew hundreds of masks and mail them to friends. That’s a lot of fear folks!

You know this fear. You know it will not be ignored.

I will find something productive to do with these waves of fear that keep me in the water.

There will be no peace for a while for Seizure Mama and Rose.

Flower