Author: Flower Roberts

(Reposted Chapter 27 of Seizure Mama and Rose)

Rose stayed home from school during the first semester of the fourth grade, since she was having several seizures per week. They were not like clockwork, so we stayed poised and ready at all times. No one ever really relaxed. Every loud sound sent us running toward it. I helped her wash her hair before letting her have a few minutes of privacy behind the shower curtain. I sat on the toilet while she washed. When the curtain opened, I wrapped her in a towel and quickly dried her hair. We avoided both hot and cold extremes, since we thought her seizures might be triggered by temperature fluctuations. The bathroom floor, which was ceramic tile, was covered by numerous rubber-backed rugs in case of a fall.
At this point we rarely left her side. She seized everywhere doing anything. When we went places we held on to her. She got in the habit of walking everywhere arm-in-arm with another person. We carefully picked where she sat. Was the chair stable and sturdy? If she fell, what would she hit? I am sure other parents were puzzled by our behavior. Observers could not see anything wrong with our lovely Rose. We must have seemed like over-protective, hover-smother parents. We got looks and sometimes inquisitive comments. These meant nothing to us. We knew we had to protect Rose from gravity. A hard fall meant a hurt face, or shoulder, or arm. She could be thrown down with great force at any second. There was no place to go where there was no gravity, so we were there to stop the falls. If the seizure/terrorist did not show up today, and we had not seen it yesterday, then it was coming tomorrow.
So we spent most of our time that year alone in our seizure-ready home full of rugs and pillows. Few folks came to visit. We did not want much company. We disappeared off everyone’s radar. It was just us, Rose, and the epilepsy, trying to get through each day safely.
The elementary school sent Rose a teacher. He would arrive in the afternoons. Our library room would be straightened and dusted, readied for his visits. The table in the center of the room was cleared and polished. The ceiling fan would be turned on low. A snack would be prepared for presentation to Rose’s guest. I would meet Mr. F at the door with a smile. Rose would be dressed and ready for her lessons.
These afternoon lessons were a blessing to me and Rose’s brother, as well as to Rose. The teacher acted as our back-up Rose-monitor. I could retreat to the kitchen to fix supper, within ear-shot. I could not discern what Rose and her teacher were saying, but I could hear the steady rhythm of her teacher’s voice, punctuated by Rose’s laughter. She loved Mr. F’s visits. Sometimes he was the only non-family member she saw during the week.
My son enjoyed these afternoons as well. He got on his bike with a walkie-talkie attached and rode through the woods surrounding our house. He knew he could be called back home if needed. Mr.F was there, so he could relax. These afternoons were a respite for him. He loved riding his bike and he felt peace in the forest. All was well during the afternoon lessons.

Seizure Mama speaks to parents:

You cannot do this alone. Being on edge every minute will poison you. It will poison your whole family. Get some support. All of you need some relaxation and rest. You are playing a long game here. Do not put your life off until this is over. This is your life now. Things may change for better or worse, but now is what it is. You all have to survive and thrive together.
These afternoon lessons let my son be a little boy for a few hours. Being a big brother is a huge responsibility when the little sister has seizures. At these times he could be free to ride fast and dream big. He would later become a mountain bike racer. He and his dad enjoyed this sport together. Those seeds of passion were planted on those afternoons when he could just be himself. I will always appreciate Mr. F for the gift he gave to both my children.

When one is truly desperate there is a tendency to grab for any limb within reach. This is understandable, but pause and breathe first. Examine the limb before latching on.

False hope can have long-lasting, negative effects on everyone involved. False hope is a fast fix. One gets a surge of hope followed by remorse and shame…or worse. You need a real fix that lasts.

Real hope requires reasoning and planning. I am one who spends way too much time in the frying pan before jumping. It’s the scientist in me. That is not a bad thing. Bouncing from drug to drug or doctor to doctor solves nothing.

Your approach must be systematic. Fully test a treatment (or doctor)before scrapping it completely. The other side of that is…know when to say when.

My advice at these moments is ” Pause and Breathe.” That sounds simplistic, but in that small, quiet space of time your thoughts can collect themselves and stop scrambling around for a solution.

Our second neurologist was correct in saying we had sampled the drug smorgasbord without truly testing the drugs’ effects. Each variant must be tested alone. We had been mixing our cocktails with no recipe. We had been shaken and stirred!

When something is not working. Pause and breathe. Then analyze what the root cause really is an go from there.

That’s how you get to some real hope.

Mama Flow

Reposted Chapter 26: A New Neurologist

After the toxicity scare, we no longer had confidence in neurologist #1. The doctor’s responses to our questions seemed short and unfocused. The drug and dose changes that she recommended seemed random. Our chart of drug changes was full of changes in dosages and seizures.
We asked for a second opinion. This first neurologist sent a letter of introduction for Rose to another neurologist in a different city. The letter described Rose’s condition and drug trials and requested a second look at Rose’s possible treatments for the future. I bet neurologist #1 was happy to pass hot-potato Rose off for some re-enforcements. I appreciated that a second specialist was going to have input into Rose’s care.
Our first visit with neurologist #2 took hours. He was very thorough and reassuring. He wanted to nail down the type and source of these seizures. He felt that Rose had been prescribed too many drugs on too small doses to rule them out as an effective treatment. He wanted Rose in an Epilepsy Monitoring Unit(EMU) to get a video-EEG. He said he felt we had been yawing around the pond of treatment choices.
This was a relief for us. We felt the same way. It was like Rose had been part of a badly designed experiment with too many variables. We were now going to get some hard data we could use to get better results. We finally felt hopeful.
We felt like this doctor heard what we were saying and understood what we were feeling. We didn’t just want to try something new. We wanted what we did next to be the right choice, not just a random change. We needed all the cards to be put on the table. It was time. Rose needed to learn and grow, not fall and fail.

Seizure Mama speaks to parents:

No one doctor knows everything. Each has his/her own training and experiences. It is always good to get a second opinion. Do not be afraid to ask for one. It may be just what you need to get a better result. Your current, struggling physician may appreciate your nicely worded, respectful request.
Do not, however, bounce from one specialist to the next in hopes of finding a quick fix. Patience is needed when trying out drugs and doctors. Do not secretly sneak around because each physician needs to see all your child’s records to make informed decisions and avoid repeating failed treatments.
I would also advise getting a second opinion for any surgical procedure. Even though installing a VNS(vagus nerve stimulator) may be a simple procedure, the device is permanent. You are making decisions for your child. Do it carefully and wisely. Get as much input as is reasonable.

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.

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

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.

Mama FLOW

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.