Author: Flower Roberts

seizuremamaandrose.org

Anything But Zero

I have high goals for my other blog, 50 views and 10 countries per day. That blog rarely misses the mark. That makes me happy.


For this blog, seizuremamaandrose, the goal is simple…


Anything but Zero.

That sounds like I have low hopes for
Seizure Mama and Rose, but the truth is that I have really high hopes. One view here is way more important than 50 about plants.


My hope that whoever needs us will find it.


That’s all. That is why we are here.That is why we have given away more books than we have sold. This is a mission.


My heart needs for someone, somewhere to be helped through their struggles by our stories. I want that person to know they are not alone. They may find an event in our past that rings true for them and gives them hope.


I only wish they could see Rose now. Driving and making her rounds around town. Eating in restaurants, ordering books from the local bookstore, visiting friends and stopping by our favorite gift shop to chat with two of our favorite women.

She has started going to a park to write. It has taken a lot of healing for her to start writing again. It is my sincere hope that someday Rose will take the helm of Seizure Mama and Rose. Then our readers can hear her voice.

I want the sequel to be, Rose on Her Own. That’s what we all want isn’t it moms? For our children to grow strong and as independent as possible.

But for now, I will keep our blog and book going out in the world to help others dealing with this invisible, interferring ailment, epilepsy, while hoping for

Anything but Zero.

Love and hope,

Mama

Mama Bear to Mama Dare

I woke up to the image of the octopus carrying two halves of a coconut shell. You may not know what this means, but I do.
It means giving up freedom for safety. That’s what I have done. That’s what I have modeled for Rose…until now.

Hitting rock-bottom is a great place to start transformation because only YOU can choose when and if to move. That’s how it starts Mama Bears. The fear has won and you are stuck down there on the bottom. You can stay down as long as you like.

Is this a future down here paralyzed with fear? You are not dead, but you might as well be. That is where I was late last summer, down and not getting up. Why should I? When I rose up from the ashes, I would be carrying the same fear and shoveling that same sand against the same tides. Lose:lose:lose…

Is safety the ultimate goal? Is life on the bottom worth living? What are those two halves of coconut shell REALLY doing for you? They are like two anchors weighing you down. You are carrying them around just in case you need them.

Do you REALLY want your child doing this? Remember, this is their childhood. You did not start lugging around fear until you became a parent. They do not realize this.

Is this REALLY safety or just the illusion of it. What are you REALLY prepared for with those coconut halves? Guilt avoidance? Shield from blame?

Stop with all that safety. Do what is necessary and drop the rest of that load of ‘Preparedness for all the What Ifs of the World.’ Will those two halves of coconut shell REALLY save you?

I dare you to drop them and run free. I dare you to let your child see you without that shell. I dare you to drop the damn fear.

I did and a miracle has finally happened. Rose dropped her fear, too. She is writing, she is reading, she is talking, she is calling friends. SHE IS BACK!

Mama Bear… drop the damn shell.

Walk free and see what will be.

Please.

Just Mama…No Seizure

Just Becca and Rose

https://www.msn.com/en-us/video/animals/octopus-walks-along-ocean-floor-carrying-coconut/vi-AA1zNbiv

Good News and Bad News

Rose is finally driving again. She is enjoying her return to independence and arranging trips with friends. I am so happy to be at this point after months without that freedom. She continues to search for training and employment opportunities.


A new symptom has emerged…aphasia. It started six days ago. Her speech has improved, but there are still occassional pronunciation glitches. We are still waiting to hear from her neurologist. We expect some scans will be required to get to the source/cause. I will not borrow trouble until then.

Mama in waiting.

The Book of Another Mother

I finished Tara Heaton’s book late last night. I have the habit of highlighting and scribbling notes in the margins as I read. Almost every page of LIFE MINUTES Igniting Joy from the Fire of Heartache has been marked with hearts, tears, omg’s or YES in the margins.

Tara has laid it bare. My heart hurt with empathy as she described the tumultuous journey through various treatments for her daughter, Caroline. Other mothers will recognize the names of these drugs, treatments and hospitals. She has been another mother who has left no stone unturned looking for answers.

She also beautifully documents the effects this epilepsy treatment quest has had on her other two children, her marriage, her career and her own well-being. Epilepsy is a medical odyssey for the whole family, not just the patient. Tara shares how her family and friends have played important roles in the quest for Caroline’s cure.

I find this book an affirmation to my own story and struggles and also inspiration to my continued quest to find a cure for Rose’s seizures.

Tara is a fearless advocate in the continued search for the best care for our precious epilepsy patients. Her flame burns bright.

Bravo Mama Tara!

Seizure Mama FLOW

Another Writing Mother

A miraculous thing happened at the ‘ Wild Awakenings’  writing workshop with Cheryl Strayed which I attended this weekend in the mountains of North Carolina. I consider my getting myself to attend as a miracle, but that’s not it.

In a huge hall of over three hundred other writers, a lovely woman wearing flowing Beatles pants sat down in the seat beside me. She had on fingerless gloves with crocheted pink flowers on them. I instantly knew this was my kind of person.

She asked what writing projects I was involved in. I answered that I had written a book about my daughter’s epilepsy. She replied that she had just released a book about her daughter’s epilepsy. She asked how old my daughter is. I replied 32. She gasped and said her daughter is also 32.

(Pause here to do the math.)

This was a miracle. Of course we hugged. Of course I cried. We exchanged books.

The Universe sends us what we need just when we need it.

SEIZURE MAMAS

Seizure Mama and Cheryl Strayed

Passing the Battleaxe

It is past time for Rose to take ownership of her life. Her family has been fighting battles with her and for her.  She expects too much support and help at age 32.

Rose can drive again in April, if she remains seizure-free. She did apply for a job, I am told. There has been some stepping it up in terms of help around the house, while I have been gone. I have taken myself out of the enabling equation by taking myself elsewhere.

I wish this title was ‘Passing the Baton’ but it is so much more complicated than that. Our dynamics here evolved when the seizures and side effects were relentless. We were in survival mode. It was truly a battle to keep her alive. Keeping her safe from falls was almost impossible without an aura.

Rose needs a new arrangement with built-in checks and supports that do not always involve her dad and me. This will take technology, transportation, a safe environment and a support team.

I have been recommending and pushing for progress for a year now. Sometimes, we have to stand back and stand down before independence can take root.

I have to do this for me and for Rose. I am battle weary. I am older with many injuries of my own that need to heal.

She is stronger than she realizes. She can fight her own battles. My Mama Bear fire burns bright inside her. She senses injustices acutely. She is a champion of the weak.

Seizure Mama is passing the battleaxe to its rightful owner and walking away.

It is time.

Flower

How Rose Got Strong

Rose got strong by falling down
and getting back up by herself.

I have said it is her SUPERPOWER

Rose got very sick several times at college
She walked to the infirmary by herself.
She got medications and went home to rest and recover by herself.

Rose had a seizure at work, gashed her head open, got staples at the ER, missed a week of work and went back to work by herself.

Rose ran over a boulder in the dark on a mountain road and drove home by herself.
Rose’s car was totaled. She had it towed away and got a replacement rental car.

Rose got help when she needed help. No one was hovering in the wings waiting to rush out and save her. We were three hours away.

Rose took care of herself by herself. She had to. She needed to be stronger than the strongest healthy woman.

Rose had a stroke in her dormroom and crawled across the floor and beat on the bathroom door with her unparalyzed arm until her suitemate heard her and called an ambulance.

She did homework and emailed her professors from ICU. She went back to school a week later. Weak but determined to graduate on time.

Rose had heart surgery right after graduation to close the hole in her heart. She watched on a screen as the surgeon closed the hole. That is who she is!

THEN SHE CAME BACK HOME TO LIVE WITH HER  PARENTS.

She has spent TWO YEARS transitioning onto a new medication combination that failed and then back to the old medication combination that worked better, but not completely.

Now we are waiting until she can drive in April. Then what? She still has epilepsy.

IS SHE STILL STRONG? MAYBE.

We do not know for sure because she doesn’t have to be. Enabling is involved. Slackness is tolerated. There are no consequences. We are here to do for her what she does not do for herself.

SHE NEEDS TO BE BY HERSELF TO BE STRONG.

DO NOT ROB YOUR SPECIAL CHILD OF THEIR SUPERPOWER!

S T O P       N O W

Right now!

Mama