A Surprise Dinner for Two

Reposted Chapter 25: Dinner for Two

When the seizures were relentless, we never left Rose. EVER. This is no exaggeration. I stayed with her almost one hundred percent of the time, even when her dad was at home. I was a scared steadfast sentry. Once every few weeks I would go out shopping by myself. It seemed strange that the world was going on as if nothing was wrong, while we stayed home waiting for the next catastrophe.
On one of my rare outings, I ran into a mother of a boy who was on my son’s former coach’s pitch ball team. I had not seen her in years. She was wealthy with a healthy son. She proceeded to bend my ear about all her problems. They had to clean their rental condo at the beach themselves. Her parents needed her to drive them to doctors’ appointments. She continued to list her problems for many minutes. I do not know why I did not walk away. This was my brief period of time out in the real world and I was standing in a store listening to an acquaintance complain.
Our world was tiny and tense. Rose’s dad and I were not a couple, we were a tag team. Somebody had to work. Somebody had to shop. I was holding down the fort single-handedly while my husband and son went on and went out. This was a tough time in our marriage. We were Rose’s parents and protectors. We were mom and dad, not mister and missus. There was never a chance to be alone together. We were on duty twenty-four/seven.
We expected Valentine’s Day to be more of the same- the four of us, at home alone. But my sister-in-law had different ideas. That evening she and my brother-in-law and nieces appeared at our door. She had cooked a romantic dinner for two and brought pizzas for everyone else. As they ate pizza in our library, Rose’s dad and I sat at the kitchen table alone, enjoying a delicious meal. It was hard to know what to say to each other. Our conversations were always about the children, planning the next doctor’s appointment, discussing drugs and side effects, planning a school project, or scheduling our son’s transportation to races.
What does one talk about during the eye of a tornado? We mostly enjoyed our silence as we listened to the chatter in the next room. We were thankful to have family and happy to be together but not alone. That romantic dinner was a shot in the arm, a booster to keep us going as a couple while we struggled as a family.

Seizure Mama speaks to parents:

First, do not be that woman in the store. While you are standing there bombarding someone with all your issues, they may be silently suffering with more problems than you ever dreamed of. Don’t be a “Debbie Downer.”

Second, you are not just your fragile child’s parent. You have other children, siblings, parents, friends, and coworkers. These people need you and you need them. Let them know how to help you. They want to, but are not sure what to do. When Rose’s seizures occurred frequently, the families in our church took turns bringing us meals. We loved seeing our friends and doing a little less cooking and shopping. Rose got to see folks other than her tense family.

Lastly, a divided house can not stand. You need to stay married. Don’t keep your child as a barrier between the two of you. Someday your baby will grow up and move on, and two strangers will be sharing your house. You are not just modeling parenting; you are also modeling a marriage.

THEN and NOW to follow. I recently found photographs of this event. Such a sweet gesture by a sweet sister-in-law.

Shedding the Shoulds

I am an analytical person. I look at things and immediately see potential for improvement. (This is a nice way of saying that I see what is wrong.) Of course my next step is to try to fix or improve the subject that I am observing. Sometimes it becomes an obsession.

I trim, I paint, I rearrange, I replant, I move things and remove things. This seems to be a harmless habit until the subject is something I have no control over.

That’s when the “shoulds” show up. That should be done this way. This should not have happened. Somebody should fix that.

Do the “shoulds” change anything? Can I change everything? NO FLOW!

I am in the midst of a “Should Storm” right now. I am surrounded by things that are not what I expected, or wanted, or needed. I could drive myself insane obsessing. I could butt in to business that is not my own and interfere, but since no one has seen fit to pronounce me Queen of the World I must stand down.

I must be patient. I must hold my tongue. I must accept these unwanted happenings and unwelcome changes. This is not my usual mode of operation. I usually move in and take charge.

Have I given up and given in? I hope not.

I am hoping this is wisdom. It is about time some of that showed up.

Mama Flow

Kindness is Mentored: Meanness is Modeled

I have learned to truly appreciate kindness as I get older. I have watched how important being kind to one another really is as the world has gotten more political and divisive.

As a mother, I always tried to teach my children to be kind. I encouraged gentleness with all living things. I guided them to be quiet and respectful with old people. I wanted my children to make the world a better place.

Meanwhile, I modeled something quite different. I am angry. My plans for myself and my daughter have been high-jacked by epilepsy. My career was side-tracked. My retirement was greatly reduced. I became a prop in Rose’s world. This was my doing. I thought that if I gave up more…she would have more. But that is not how the world works.

My anger seeped out while Rose was watching, since we were always together. It was usually not directed and her, but I feel somehow she knew that my rage was related to her. We were tethered together for months at a time while the seizures were at their worst.

I modeled meanness. I yelled at other drivers. I growled under my breath in stores. I threw things. I used profanity.

Rose was watching and listening. I had mentored my children correctly, but my modeling was horrific. Do as I say, not as I do?

Rose is a good person. She is kind. When she spews anger, I see myself and I am ashamed.

Do not do as I have done, Another Mother.


Kind Kids

Reposted Chapter 24: Kind Kids

Of course epilepsy came on vacation with us. Rose had three seizures during our week at the beach. Two occurred while she was swimming in the pool. She always wore a life jacket in the water and someone stayed an arm’s-length away. I knew it was risky to let her swim, but she loved it so much. We live on a lake so our family and friends swam a lot. We could not forbid Rose from participating in something we all enjoyed together. If she seized in the water, we just held her until the seizure ended and carried her out to a lawn chair to sleep afterward. We suspected extreme temperature changes triggered seizures, and so we tried to avoid the water in the mornings when it was cooler. We also covered Rose with a towel when she got out so she would not get chilled.
Rose also loved the ocean,but swimming with her among the waves made me a complete wreck. I was afraid we would both go under if she seized in the ocean. She was content to go in for only a few minutes and then play in the tidal pools with her shovel searching for little fish and shells, and building sand sculptures.
One day Rose and I had just walked down onto the beach and picked our spot on the edge of a tidal pool. I set down our bags and towels just as Rose fell face first into the sand. I placed her on her side to seize, as I tried to wipe off some of the sand that stuck to her face. A nice lady nearby offered me a bottle of water to wash her off. The seizure soon ended, but Rose was covered in wet, sticky sand. I swaddled her in a towel and sat close beside her to wait out the thirty minutes or so it would take before she woke up. My family could see us from the porch of the condominium, so I knew help would arrive when someone spotted Rose lying still under a towel.
While I was sitting quietly beside Rose, two boys about her age walked by. They were carrying a surfboard, table-fashion, covered with an assortment of shells and seaweed. They both glanced at Rose as they passed, but soon put down their board and walked back to me. They asked what was wrong with Rose. I explained that she had had a seizure but would be fine when she woke up. I asked about the treasures they were carrying on their board. I shared that Rose would have loved to see their haul from the sea if she were awake. They walked back to their board and one returned carrying a giant pin shell. “Give her that when she wakes up” he said. We still have this treasure.

Seizure Mama speaks to parents:

There will be many children who do not understand seizures Some children will be afraid of your child after seeing him/her seize. There will be a stigma. It will be harmful and painful.
There will also be children with great kindness,who will be protective of your fragile child. They will be loyal friends. Relish the memories of the kind kids. They are the angels of this broken world.

MAMA has a lot to say about this one.

Toxic with a Timer

(Reposted Chapter 23: Toxic with a Timer)

Rose’s latest drug combination became a recipe for disaster. Now she was constantly dizzy and nauseated. She was limp and barely moving or responding. She was silent. She was being poisoned.
We put her on the couch so we could all keep an eye on her. At this time, she was on three drugs,one of which was an extended release form. One drug must have amplified the affects of the other two. Her nausea and vomiting soon turned to dry heaves and bile. Her seizures were clustering. We knew she was in danger.
We called the on-call neurologist at about 11PM. The doctor’s foreign accent made our conversation difficult. My husband and I were both on the line listening. We thought the doctor said to use the emergency drug if Rose had another seizure and then take her to the Emergency Room if she had another seizure after that. Was that really what the doctor said? Two more seizures and then the ER?
The next morning Rose was very pale, weak and, listless. She barely moved. We tried desperately to get her to eat and drink each time she woke up. She was fading before our eyes. I called the doctor’s office as soon as it opened to report Rose’s condition. I cried as I explained that she seemed poisoned by these three anti-convulsant drugs.
The wise nurse calmly told us to get a timer. She said to set it for twenty minutes. Every time it went off, we were to wake Rose up and make her sit up, and sip some water. We set and re-set the timer all day long. For hours we watched her and waited for the timer’s bell to ring, over and over.
Hours later she began to improve. The poison was being diluted. Rose was re-hydrating. The color came back in her face. She was safe. No trip to the Emergency Room required.

Seizure Mama speaks to parents:

We kept gel in the refrigerator to put on Rose’s arm for nausea. There were several times when her vomiting led to seizures because she had thrown up her medication. We began sifting through her vomit if it occurred soon after a dose of medications. I know this seems gross, but you need to know whether a dose needs to be replaced or not. Doubling a dose may be worse than missing a dose. You need to be sure which to do.
This particular situation was the exact opposite of seizing due to lack of medications. Rose was sick and seizing before ever throwing up. Her dosages were too high. The combination was too much. She was listless and unresponsive. I still distinctly remember this because I was so afraid.
Know your child’s dosages and drugs. If you go to the Emergency Room, drawing blood and checking drug levels may be an important piece of information for the doctors involved in the treatment.
We wrote down all dosages on a calendar and used a pill organizer. There was no guessing about the medications that were taken. We also recorded how the dosages affected her. This information was used to convince the neurologist that she needed a different drug or combo. Do not count on your memory. Write it down.

A Forced Hand

(THEN and NOW for Chapter 21: The Painful Appointment/Past Time for a Change)

Being proactive takes confidence. I had none at this point. I did not have a clue what to do.

But I did know what not to do, which is what we had been doing. We were poisoning Rose to try to stop her seizures. She was disappearing and they were still with us.

I remember the slaw and the spork. I remember Rose’s pale face and shaky hands. The day was painful, the appointment was excruciating.

I still had a tiny spark of fire deep inside my watered down and drowning mama-self. That spark flamed up as I watched Rose struggle to sit up and put food in her mouth. Something had to change. I had to do something.

It does not matter whether the fire lit was fear or love. What mattered was that it forced my scared self back up to that office to shakily whisper what I needed for my baby. (Rose was nine.)

That spark grew as I contemplated what to say in that waiting room. By the time we got to meet with the doctor again, my forced hand was on fire. Yes, I was intimidated. But change was necessary. New drugs? New doctor? No matter. It was Past Time for a Change!

Past Time for a Change

Reposted Chapter 21: The Painful Appointment

We had felt good about the first neurologist in the beginning. The doctor was observant and thoughtful. We had previously left each of our appointments with several written plans of action in case the first option did not bring the results we hoped for. If plan ‘A’ did not work, we also had plans ‘B’ and ‘C’ if needed. Now we felt like Rose was part of a chaotic experiment without planned strategies or goals.
Rose had a long and strong seizure the day before this appointment. She slept on the way to the doctor’s office and wouldn’t hold her head up during the visit. The doctor seemed not to notice Rose’s lethargic condition. Instead I was scolded for the numerous calls I had made to the nurses. The doctor mentioned wanting another EEG(electroencephalogram) and mentioned the possibility of VNS(vagus nerve stimulator) placement.
We were taken aback by these suggestions. We thought we had come for a much needed plan for our next trials with different medications. Instead it seemed that we were at the end of the medication regimen and headed for surgery. Our instructions were to stay on drugs 3S, 4L and 5Z. Stay on these three drugs? What we were doing was not working. Why were we not doing something different?
Here was our nine year old daughter slumped down in a chair, pale and unresponsive and we were supposed to continue on with these same drugs and dosages. We left the appointment and went downstairs in the building to eat lunch at one of Rose’s favorite restaurants. Rose’s hand was so shaky that she couldn’t use a fork. I had to feed her the slaw. I was feeding my nine-year-old because she could not feed herself, but there would be no change in her treatment? This was unacceptable and infuriating.
We all went back upstairs to the doctor’s reception area. I was so shaken that I could barely speak as I explained to the receptionist why we were back. We had to wait until all the other families finished their appointments before the lunch break. It was interesting watching the other struggling families while we waited. The parents were anxious while the children were bored and restless. One father was irate and loud about a mistake that was made by the receptionist.
Finally we got to speak with the doctor again, and before we left we had a new plan. I had the doctor write it down. I still have the paper. Rose was to go down on 4L, off of drug 3S go up on drug 5Z and add a new drug 6K. Was this a plan or a punishment? This was like playing a game of roulette using strong drugs on a young child. Was this new plan better than no change? It gets worse from here.

Seizure Mama speaks to parents:

You must be politely proactive. Although different dosages and a new drug made things worse in this circumstance, sticking with the same regimen would have prolonged the process of finding the right combination. Months later we concluded that 4L was the drug from hell. We never found the therapeutic dose. The effective window was so small that we shot past it and Rose eventually went toxic on this drug combination.
Keep good records and write down everything. Things got so bad that I couldn’t think straight. I was a wreck during these months. We felt damned. Maybe you know how that feels. God help us all.

The Down-low on the Download

(Then and Now on Chapter 19: Just a Mama)

I guess this still stings because it was the beginning of my letting go of a lot my expectations for myself and for Rose. Neurologist #1 had warned us about this. I did not want to hear it. She let us know that the path for Rose would no longer be straight. It felt like a slap at the time. Her words echoed in my mind many times through the years. I ended up appreciating these “mean” words.

I want to be clear here, Other Mothers, that this was not a lowering of my expectations for us, it was a morphing. We all have plans and aspirations. It was necessary to let go of these remote dreams and reach for goals that were near-by and doable. Flexibility became absolutely essential. Raising Rose required careful, slower steps to get where she is now. She has surpassed my dreams for her at age 29. I cannot wait to see what she does next.

Back then, I wanted to be a super mom. I wanted to make a difference everywhere we went. I was used to being a super busy teacher, so running hot was my mode. The busy part bit me. When I needed to give up all my volunteer post, other wiser mothers did not take my batons. At first I was miffed at them. Later I was miffed at myself. Finally, I let each organization know that I was leaving my post. The world did not end. Rose and I were better off with me being ‘Just a Mama.’ There were many other people who could have done these jobs, but Rose had only one mother.

Rose’s seizures were unrelenting at this point. All my focus needed to be on her. I needed to monitor her drug dosages, the side effects, the changes in her mood and memory. She needed extra help and time to do everything. That brain was having storms and storm damage. It was a scary time for all of us. Her falls were fast and her seizures were strong. Every day was about damage control, not Brownie badges, Accelerated Reader points or spelling.

If you ever get to this scary point in your epilepsy journey with your child. I hope you can drop everything temporarily. No more Super Mom, no more Smart Student, just survival.

During the chaos, please remember two things. Take care of yourself and write everything down.

Love Flower

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.


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