Author: Flower Roberts

seizuremamaandrose.org

Dear Parents: Then and Now

I wrote the letter to parents last. I wanted any parent who picked up this book to immediately sense empathy. I wanted them to know that we as parents recorded our experiences honestly and even ignorantly. We did not have all the answers. Nobody did.

I wanted to send a message of hope to anyone desperate and scared enough to read a book with the words seizure and epilepsy on the front cover. I hoped our stories to be like a remote friend that had been where the reader was, having conversations about our common experiences.

This is not pleasure reading, it is desperate, panicked reading. I remember when I started looking for anything that might help us. We were grasping for any straws that might lead to a better treatment. No drugs had worked. We had many side effects, but no progress.

I also wanted to let the parents know that a cure may not be in the cards. This was a giant pill for us to swallow. We kept searching for a magic drug only to discover there were bad drugs and worse drugs and possibly no drug that would control Rose’s seizures. Our search for an effective combination took twenty years.

We were fortunate to find the right treatment only because we never stopped searching and we had a neurologist who refused to give up on Rose. If you have not found the right neurologist, keep searching. Giving up gets you nowhere.

This may take over your life for a while. Save a tiny part separate. For me, it was my garden. It was always waiting for me to shed my role as Seizure Mama and return to being the Flower. My garden has saved my soul and sanity over and over again when everything else fell apart.

Get yourself a little life raft to hold on to and keep you busy during the storms. A purposeful hobby that your troubled mind can escape to., to take your thoughts somewhere else besides epilepsy. I have sewn hundred of masks through the pandemic to curb my fears. I could not stop the virus, but I could help protect people I knew from getting it.

I want to highlight that your role as a parent is a supporting role. You do props and costumes and stay behind the curtain. You do not have epilepsy, your child does. Make them face it. Make them handle it. Make them own it.

They will need every scrap of strength and perseverance to get through this life with epilepsy. They must practice being tenacious and tough. They must develop their superpower of going it alone and fighting their own battles.

Getting back up is the tough part, but that is when the magic happens.

Seizure Mama

My Plan for the Year

I hope to post a story from our book, Seizure Mama and Rose, on Saturdays and then write a follow-up post mid-week for the next 52 weeks.

This is my “purge project.”

A year from now Rose will graduate and we both will move on with our lives.

I want to know that our struggles and victories are out there for others to find.

This journey has been long. It has made us both strong and fragile.

Do not worry “Other Mothers”, you will know where to find me.

Come along for our twenty-year journey “Diaper to Dorm Room” with me giving my take on things decades later.

Welcome to our lives…

Seizure Mama

Let’s Begin Again

Seizure Mama and Rose; 1994

Join us as we journey from diaper to dorm room.

Dear Parents,
I wish I could claim that this is a “How to” manual for raising a child with epilepsy. It is not. This is the story of raising our daughter Rose. We made many mistakes. Our family did the best we could despite our own fears and ignorance. We were never trained as parents, much less as medical specialist. Our job was to raise Rose, not to cure her. We found the best doctors and tried many medications, but a treatment is not a cure. We did what parents do. We flew by the seat of our pants with our hearts wide open and breaking.
I do not recommend you follow this twisted trail of breadcrumbs that I have left here for you to read. I only hope that you recognize your own struggles among these stories and realize that you are not alone. Someone else has been where you are now, as terrified parent, and survived to tell the tale.
Just remember you do not get to be the superhero in your child’s story.
Yours is a supporting role.
Your child is the star.
When they fall down, you help them up.
Eventually, they will not need your help to get back up.
Getting back up is the important part.
Your job is to get them strong enough to rise on their own.
Then you can stand back with pride and watch them rise.
This is where we are now…
Watching Rose Rise

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