Author: Flower Roberts

The new variants are more contagious.

Everyone needs to increase vigilance until we are vaccinated…at the least.

This link gives great information on how to be better protected.

STAY SAFE and STOP THE SPREAD

https://www.npr.org/sections/health-shots/2021/02/03/962197192/5-hacks-to-make-your-face-mask-more-protective?utm_campaign=storyshare&utm_source=facebook.com&utm_medium=social&fbclid=IwAR1c7vB3ylFw1XvDubtGhyuOJgAAGf8twDzwOcXB0wX3kaakHJFARjSzVdY

We arrive at this day, January 21, 2021 both hopeful and grateful.

On this date last year, we released our memoir Seizure Mama and Rose by Flower Roberts.

I will be forever grateful to our publisher Joshua A. Holmes for helping me rush our book to print as my late father battled cancer. I will always remember my friends, Jimmy and Joyce, helping to quickly edit our book after my sister, Rachel, hurriedly marked it up.

Most of my gratitude goes to Rose, who not only survived these stories but also courageously agreed to share them. Her bravery continues to inspire me to take the hills of this life.

This has been a tumultuous year for our family and our nation. Our family is grieving the loss of my precious father, but also healing and helping each other. I remain hopeful for improvements in the curbing of the pandemic and the political unrest in America.

One of the bright spots of the publishing experience has been hearing from other parents of children with epilepsy, advocates for the disabled and medical professionals. It warms our heart to know that our stories have helped you.

Thanks to all who have read our book and responded.

Flower Roberts

Here is the link to a helpful post on my other blog which is usually about gardening.

Fake Masks

Before this terrible year ends, I wanted to share two old posts.

I meant to share these sooner, but I had quite a bit of sewing to do.

Many masks were mailed or delivered to those I hold dear.

Here are two HOLIDAY-appropriate posts.

The first is about handling holiday activities

the second about folks with seizures avoiding RED DYE 40.

https://seizuremamaandrose.org/2017/11/23/handle-the-holiday-stress/

‘Status in the Lab’ due to RED DYE #40

50 Status in the Lab

My son ended up in the Intensive Care Unit at our local hospital due to an isolated auto-immune event. He was transferred to our favorite hospital, which is an hour’s drive away. We made the drive back and forth every day. My husband and I tag-teamed for the three weeks while our son was in the hospital and rehab so that he was never alone.
I still had to teach my classes and labs at night at our local community college. Rose had to accompany me to my classes and labs during these weeks. We would visit my son each day and leave in the late afternoon to drive an hour back toward home and eat supper on the way. We would then go directly to the college. I would leave Rose in the lab during the lectures in the adjoining room. Then my students and I would enter the lab for another three hours.
On this particular night, Rose and I had stopped and eaten fast food on the way. Rose had gotten an ice cream float made with a red soft drink. Earlier that day she had bought a red drink from a drink machine in the hospital. It was a stressful time. No one was eating or sleeping well.
On this particular evening, I finished up the lecture and my class and I entered the lab. We happened to be dissecting hearts that night. There was definitely an aroma in the laboratory. Rose complained about everything stinking. I had just gone over the cat’s heart parts with the class. I asked Rose to help me put my demo cat back in the bag. As soon as she finished, she said she felt strange.
I told her to come around behind the front station with me and sit on the floor. She went into full seizure as soon as she sat down. One seizure finished and another started.
I alerted some of my students to assist me. Many were Certified Nursing Assistants taking classes to get into the nursing program. They knew just what to do. When the third seizure started I covered Rose with my lab coat and administered her emergency medication. The seizures stopped.
One of the students that assisted me sat on the floor beside Rose and cried afterward. She shared that her seventeen-year-old brother had seizures. No one had ever told her family about this emergency medication. They usually had to transport him to the hospital at times like this. This girl stayed beside Rose long after the lab was over. This young woman and the mother of one of my former students at the middle school stayed late. The two finally agreed to leave only if they could find a campus security officer and bring him to the lab. I truly appreciated these two women staying with us. I was exhausted before class even started and now I was totally spent physically and emotionally.
This was the event that led to Rose avoiding Red Dye #40. We remembered our neighbor’s beagle had seizures if he ate red colored food. Since that night in the lab, Rose has avoided red foods and has read food labels. It is amazing how many non-red products contain Red Dye #40. We believe that red dye had been one of her triggers all along. I wish we had figured this out sooner.

Seizure Mama speaks to parents:

First, we have learned that Red Dye #40 does affect the brain. Think of all the brightly colored foods that are marketed to children. Once you start looking at all the chemicals in foods, you start to wonder what the effects of those might be on a young body and brain trying to grow and develop.
Second, everywhere I go, someone knows someone affected by epilepsy. You are not alone. Many folks don’t share their stories until they connect with someone who will understand. Then the flood gates open.

WARNING: Misery loves company. Maintain your boundaries. You don’t need to host a pity party everywhere you go. Listen, share a story, maybe some good sources for information, such as the Epilepsy Foundation of America. Then gently remove yourself.
When I taught middle school I used to get very upset about bad things happening to my students. Rose would put my face between her hands and look into my eyes and say, “You are not their mama.”
Sometimes you have too much trouble of your own to be borrowing someone else’s. Remember whose mama you are. You may have a big heart, but you’ve got your hands full.

We are seasoned veterans of stress!

STAY SAFE

Seizure Mama and Rose

I always swore I would not let fear direct my life.

There are stories I will share when Mama can’t hear me.

She gave out fear like hugs and kisses. That was her form of love.

I have refused to share my fear as fear, so I disguise it in other forms.

healthy foods, vitamins, warm clothes, socks, blankets, wine…

My new fear product is Covid-19 masks.

I envision the virus as a plume of poison wafting in the air

until someone I love sucks it into their lungs.

This is why I am crazy. My imagination runs wild and free.

Since March, I have been making masks.

I work until my hands shake or cramp or my back hurts.

I call my sewing room ‘Purgatory.’

I make batches of similar colors. Right now I have a red and green holiday theme going.

I mail my masks to people who I need to live.

This is really a selfish thing I am doing. Do not be fooled.

I am saving the folks I need to survive. It keeps me from worrying.

Teachers, healthcare workers, friends, family, other mothers, cute strangers…

If you have not received one in the mail you probably will.

I will not stop until everyone I love (NEED) is safe.

I hate sewing, but I hate this virus more.

I guess fear and love go together after all, Mama.

I love you. Wear a mask.

Everybody’s Mama

I am sharing this post from my other blog.

I am sure that my Other Mothers will appreciate the message.

Balance

Have a happy and safe holiday.

Rose and her brother are home. We are feeling blessed.

Mama

49 The Same But Different

Any medication change brought its own changes in Rose. Sometimes she got lethargic. Other times she got aggressive. Some medications caused headaches while others caused nausea. One even greatly increased her appetite.
But there is one medication we all know by name. It is on her charts as an allergy. It gets its own story because of all the trouble it caused. When you are down, you remember what kicked you while you were lying there helpless. This drug hit her hard even before she fell and she remembers it. This is the story of our experience with that medication…and its twin.
When a person has had seizures as long as Rose has, the medication choices get more and more limited. We had already tried the main anti-epilepsy drugs in various combinations. If they worked in the beginning, some stopped working for her. Most drugs never worked or had horrible side effects.
Our hopes for Rose being seizure-free began to dwindle, so our tolerance of side effects became greater. I didn’t care if the medications made her blue and bald, as long as they stopped her seizures…or so I thought.
We slowly added this new drug F to her cocktail. She got mean. The more we added, the meaner she got. It was like the drug had magnified teen-angst by ten. Rose argued about everything. She was totally uncooperative. I remember telling a friend at church that if our house caught on fire and I screamed “The house is on fire! Get out!” Rose would probably respond ” No. My room won’t burn.”
I was with her almost all the time, so I was her target. It was hard to be verbally bullied by a normally nice person. She had been a drugged bully before, but had calmed down as her brain adjusted. After weeks of abuse, I was hoping for things to either improve with Rose’s disposition or get worse with some side effect so we would have a reason to get rid of this drug F. I got my wish. Things did start to deteriorate, but we held the line because we knew we did not have many more drug options left.
Right about this time our insurance changed. We could no longer go to the small drug store where everybody knew our names. We had to move all our prescriptions to a big box pharmacy. When I picked up the new prescription of the “Mean Teen” medication, I remember distinctly the pharmacist asking if we had questions about this drug. My reply was something like, “No thanks, we know all about its side effects already.”
I put the new bottle in her medicine basket with all the other bottles. This drug F was one of the pills that could be cut in half if needed. Rose’s dosage required that she take both whole pills and half pills. The tablets were elongated and peach colored. Every Sunday evening I would fill up her weekly AM and PM medication organizer with all her different dosages for morning and night. She had a separate, one-compartment per day organizer for the afternoon doses.
For efficiency, I would cut many tablets in half and put them back in the same bottle with the whole pills. That way I did not have to cut up pills every Sunday evening. If I cut too many pills before the refill, I just put two halves in the compartment instead of a whole pill.
Things began to change as soon as I started filling in the pill organizer with the new bottle of medication. The tablets looked the exact same. The name on the bottle looked the same, but something was different with Rose. I first used the new whole pills and the extra halves from the old bottle. This was probably a fortunate thing.
Rose began to wither. She lost her meanness, but also her spunk. The changes in Rose were gradual, but noticeable. I was pondering what could be going on. We had not changed medications. Why this transition?
The answer to this mystery came on Sunday afternoon, right before disaster struck. I will always be grateful for the timing of this discovery. Otherwise, her dad and I would have been clueless. I sat down at the kitchen table to refill the pill organizers. I had run out of the halved “Mean Teen” pills, so I needed to cut a new supply. I pulled out the pill cutter and got busy. The new pills, as I said, were the same shape and color as the ones from the little pharmacy, but they did not cut the same. I grabbed the bottles to compare them. On the old bottle the drug name ended in “-al.” On the new bottle the same root name ended in “-ate”. The big box store had switched us to a generic form of “Mean Teen” without informing us. The pharmacist had asked if I had any questions. I did not because I thought it was the same drug.
I immediately alerted Rose’s dad to the switch and how I had discovered it. Rose was sitting at the table with us. Our conversation was interrupted by explosive vomiting. Then Rose hit the floor. The onset of the seizure was so fast and her convulsions were so strong that we knew we needed back-up. Her dad dialed 911 as I lay under the table in the vomit cradling her head in my arms.
Seizure Mama speaks to parents:
Generic drugs are not the exact same as brand name drugs. We had discovered this earlier with another drug. Not only can the generics have a certain percentage less or more of the drug itself, they also have different fillers. All this can make a difference. If I had paid attention better, this reaction may not have happened. I have to tell myself that the “Mean Teen” drug in any form was not a good drug for Rose.
I did call a person at the Epilepsy Foundation of America to report the look-alike generic. I also wrote a letter to the State Pharmacy Board to share the story and to suggest that generic drugs not be allowed to mimic the look of the brand-name version. This imposter generic could have caused serious injury to our precious patient.
Pay attention to all drugs all the time. Look in the bottles before you leave the pharmacy. We have had to hand back the wrong drug several times. Be alert. Be vigilant. Use a pill organizer and lock the bottles up in a filing cabinet. You never want to wonder where some pills went. These drugs are expensive and dangerous if used incorrectly.
We should have tossed this drug to the curb long before this event. Hindsight is 20/20. This drug’s side effects almost ruined my family. Desperation should not lead to destruction.

Flower Roberts