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

Parameters

I want to send a message straight from my “mama heart” to yours.

It’s about knowing what you can do and what you cannot do.

There are better tests, treatments and therapies now. Keep searching for the right ones.

Everyone’s epilepsy is different.  You have access to more information and support.

You cannot do everything. You cannot fix everything. You cannot be everything.

Guilt is toxic. Depression is damaging. Exhaustion is depleting.

Trust yourself to do your best. That is all you can do.

Be kind to your frazzled self.

Look for tiny bits of joy everywhere.

Pause to ponder and wonder.

Protect yourself and rest.

Your fragile child needs you.

Take care of you, too.

I know your pain.

Flower

 

 

 

 

 

Trauma at the Board

PTSD is not remembering, it is reliving.

The mind takes one back to the event that caused the trauma.

The trigger time warps the person out of the present and back to the past without warning.

Instantly catapulted back to the painful event that caused the damage.

 

I was lecturing to an Anatomy and Physiology class at the local community college.

The subject was the cornea of the eyeball. I was describing its delicate nerve endings.

That is when I heard the scream.

I froze.

The scream belonged to a younger Rose.

 

Years before Rose had seized in the corner of the garden while planting flowers.

She fell face-first into the dirt with her eyes and mouth wide open.

Soil filled her mouth and eyes.

I tried to remove the dirt from her mouth. But what does one do with a dirty eyeball?

A scream erupted from Rose’s dirt-filled mouth.

A haunting, primal vocalization of deep pain that brings chills to the listener.

The sound of suffering and shock that a mother never wants to hear from her child.

Rose was rushed to an eye specialist for an eyewash and a liquid bandage on her eye.

 

As I stood at the board in front of a class full of students,

I heard this horrible scream again.

I stood silently with tears streaming down my face,  crying about the cornea.

There was a long and awkward pause as I pulled myself back together.

My precious, puzzled students patiently waited.

 

I could have continued my lecture on the cornea of the eye,

but there was something more important to teach these future nurses.

They needed to know about trauma and epilepsy.

So a story was shared about Rose and me and PTSD.

 

Mama

 

 

That Last Day

On the last day that Rose was home we went swimming in the lake.

We took a long boat ride upriver.

We grilled barbecued ribs and onions.

We tried to fit a whole summer into that last day.

We wanted her to remember home and fun and love

while she was away from us at school.

I am missing my Rose today, but I am super proud of her.

Someday she will be trained to help others during disasters.

She knows all about fear and emergencies.

Who better to be on the front lines than my Rose?

Seizure Mama

Time Travel

I have an unwanted ability to time travel.

Sometimes I get jerked out of the present

and return to a scene from the past

that I did not want to be in the first time.

Feeling the same fear over and over again.

I want to learn a new trick with this magic.

I want to travel forward into the future

and come back and tell my scarred, scared self

that everything is going to be all right.

Until then I will hang on to hope.

Seizure Mama