Stars for Navigation

This has been a year of upheaval and sadness.

Rose is trying to find her way in a world without her grandfather, Bop.

She is confused by the actions and beliefs of folks we thought we knew.

The internet has a plethora of misinformation.

This pandemic has isolated everyone.

Rose misses her international friends who were not allowed to return school.

She calls home a lot.

We cry, we laugh and we have long discussions about topics we never mentioned before.

We both are struggling to stay good and kind through our confusion and anger.

Neither of us are “sugar-coaters.” We are blatantly honest.

But we are also observant and thoughtful.

We are both learning to quietly wait and see.

Like floating in our ships while waiting for the clouds to clear

so we can navigate by the stars we know to be true.

Ignoring the flash and bang of the over-confident and ignorant.

Waiting for the dust to settle

and the phoenix to rise from the ashes of this catastrophe.

Steady Rose. Hold your course. Follow your star.

Mama

Her Own Advocate

Well mamas I think we are finally there.

I am still mama bear, but my baby can fend for herself.

She has a rather unusual curriculum this semester which includes two classes that involve physical activity.

A high heart rate is a seizure trigger for her. We know this from years of experience. We used to see her red face and tell her to rest. She now wears a fit bit to monitor this for herself.

She had to explain this to her professors. There was some doubt. I do not blame them. As a former teacher and biology instructor, I have heard outlandish excuses. We have to keep things fair.

Rose wrote to her neurologist to get a letter explaining the need for accommodations. She received a thorough letter from our hero doctor.

We have worked too hard to get her driving and living on her own to backslide.

Rose even trusts these instructors enough that she is sharing our book with them. I appreciate that she feels this level of confidence in herself, too. Our book is very personal.

I told her to handle this issue herself and she did. That is how it should be.

Someday she may have a boss who doesn’t understand her condition and she will have to be her own advocate. She needs to know how to negotiate.

This is what you want Other Mothers. A strong child who can handle their unique situations with confidence.

I am super proud of my Rose.

Flower

Hiding the Elephant

I have been known to bring home pets without permission.

Either the creature needed me or I needed it, so it came home with me.

Now, when I see an animal and say “It needs me.” or ‘I need it.”, someone in the family chants “NO MORE PETS” like a mantra.

Once, I had a long vivid dream in which I brought home a baby elephant and had to keep moving it around to hide it.

That is how I feel now, like I am hiding an elephant.

Its name is Fear.

Rose goes back to the university tomorrow. She is packing. I am sewing.

There is tenseness in the air. She knows I am anxious.

She has bags of mask to give away for her “Circle of Safety.”

Rose knows that I am a COVID nutcase.

I need her to be my ‘wingman’ on outings. I am fiercely afraid.

I fear the virus will find us. I fear it will take someone I need and love.

I have lost enough this year.

So there is Fear looming large, like an elephant.

I am trying to hide it.

I just need to keep it in check another day and a half.

Mama Bear is hiding her elephant from Baby Bear,

because Rose has her own elephants that she hides from me.

It’s a game we play, Hide and Don’t Seek.

I don’t need my elephant and neither does Rose.

Mama Bear

When Rose Goes

Rose is preparing to return to the university next week.

I am trying to be cool about it, but below the surface is…

FEAR.

Surprised? This must be your first visit to this blog.

Fear and I have a long-running feud going.

So what’s a mama bear to do when her cub leaves the den to go out into a pandemic?

My regulars probably guessed the answer…

SEW.

My strategy for handling this pandemic is to create “circles of safety” around my friends and family.

I call it “Operation COS.”

I figured they would be safer if the folks around them are safer.

So I sew. (Even my mail-carrier has my masks.)

Rose will return to school with many purple masks to share.

Male masks will be made today. I sewed in my sleep last night.

Two layers of cotton with two layers of polypropylene in the middle.

This is how crazy people get through the maze.

Seizure Mama and her sewing machine.

STAY SAFE and STOP THE SPREAD

It’s Time for a Better Mask

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

One Year Ago Today

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

Out with the Old

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