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

 

 

 

 

 

Tethered Together

A tether is a connection of a mobile thing to an immobile thing

to limit the movement of the movable part of the pair.

The irony of this description is not lost on me.

Rose was prevented from flying away and I was immobile.

I am the heavy, the anchor, the immovable.

Who wants a heavy, immovable mother?

Who wants to be heavy and immovable?

Maybe I have been looking at this the wrong way.

I want to move, too. I want to fly, too.

I am still stationary long after my Rose bird has flown.

I am still here holding down an empty fort.

I am still here.

Still tethered by fear and habit and age.

I need to rise up. I need to look up.

I need to be free from the hanging, empty tether.

Free to be me.

Free

 

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 Roses’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

 

 

The Missing Stories

The folks who know us best will notice omissions in our book.

There are missing stories.

I see no point in sharing them with our fragile and frazzled audience.

Some are painful while others are pointless.

There are stories of folks doing the wrong thing or nothing.

Why should I shame people for trying to do what they think they can do

or not trying to do what they know they cannot do.

There is so much forgiveness in my heart that I even have some left over for myself.

I am not a doctor, nurse or pharmacist. I am only a mother.

My job was to be there and care.

That’s what I did.

So friends, if you wonder why those events that you witnesssed  have been omitted from our memoir, keep in mind…

the point of our book is to help not to harm.

My ‘Other Mothers’ need stories they can learn from.

We want to stand on the edge of the crazy cliff with them,

not shove them over it.

That’s why we are here.  To stand together.

Seizure Mama and Rose

 

What do you Need?

As I am putting the finishing touches on our book,

I keep telling myself to “remember my audience.”

I want our book to help parents of children with epilepsy.

I have honestly documented events in our lives.

I have added a “Seizure Mama Speaks to Parents” after each story.

A letter to parents begins the book.

An epilogue tells about writing the book and blog.

The last chapter is about letting Rose go it alone.

That was always the goal.

What else do you need parents?

I am thankful to have this blog,

so I do not TOTALLY feel this is our ONE SHOT.

I want to do this right.

HELP ME HELP YOU.

I need honesty from my “OTHER MOTHERS.”

Seizure Mama/Flower Roberts

Image by our fabulous publisher JAHBookdesign.  Just the beginning…

A New Neurologist

Story 26 (September 2002)

After the toxicity scare, we no longer had confidence in neurologist #1. The doctor’s responses to our questions seemed short and unfocused. The drug and dose changes that she recommended seemed random. Our chart of drug changes was full of changes in dosages and seizures.
We asked for a second opinion. This first neurologist sent a letter of introduction for Rose to another neurologist in a different city. The letter described Rose’s condition and drug trials and requested a second look at Rose’s possible treatments for the future. I bet neurologist #1 was happy to pass hot-potato Rose off for some re-enforcements. I appreciated that a second specialist was going to have input into Rose’s care.
Our first visit with neurologist #2 took hours. He was very thorough and reassuring. He wanted to nail down the type and source of these seizures. He felt that Rose had been prescribed too many drugs on too small doses to rule them out as an effective treatment. He wanted Rose in an Epilepsy Monitoring Unit(EMU) to get a video-EEG. He said he felt we had been yawing around the pond of treatment choices.
This was a relief for us. We felt the same way. I was like Rose had been part of a badly designed experiment with too many variables. We were now going to get some hard data we could use to get better results. We finally felt hopeful.
We felt like this doctor heard what we were saying and understood what we were feeling. We didn’t just want to try something new. We wanted what we did next to be the right choice, not just a random change. We needed all the cards to be put on the table. It was time. Rose needed to learn and grow, not fall and fail.

Seizure Mama speaks to parents:

No one doctor knows everything. Each has his/her own training and experiences. It is always good to get a second opinion. Do not be afraid to ask for one. It may be just what you need to get a better result. Your current, struggling physician may appreciate your nicely worded, respectful request.
Do not, however, bounce from one specialist to the next in hopes of finding a quick fix. Patience is needed when trying out drugs and doctors. Do not secretly sneak around because each physician needs to see all your child’s records to make informed decisions and avoid repeating failed treatments.
I would also advise getting a second opinion for any surgical procedure. Even though installing a VNS(vagus nerve stimulator) may be a simple procedure, the device is permanent. You are making decisions for your child. Do it carefully and wisely. Get as much input as is reasonable.

We Will Need You

I have been reading another insightful memoir written by a person with epilepsy.

Each one I read brings back memories of our struggles.

Each also reminds me that this is not over for us.

Epilepsy rarely vanishes.

It does, however, hide for long periods.

Rose does not want to know this.

Neither do I.

So we are living like it is gone while we can.

But when it returns,

we will need you.

It will be hard trying to fit our big lives

back into the confined space of seizures.

While she was home for fall break, she dropped her shampoo in the shower.

It was her habit to say something to let me know she was okay.

She did not say anything. I made myself stay in my bed and listen.

Fear is never far away.

Oh, yes!

We will need you.

(I almost entitled this “She Will Need You”)

We are still tethered together.

Mother and daughter.

Epilepsy and fear.