Rescue Rose

Her heart is breaking again. There is no stopping it.

She feels the pain of others.

I do not know whether to blame DNA or MOM.

No matter. It happens and happens.

Shared suffering.

One friend has a family emergency, another is dying, no water in Yemen.

She feels it all acutely. More than empathy.

Instead of thick skin she has no skin.

Intimately connected to the ebb and flow of others.

Highly sensitive people have no filter. They feel it all.

She will steadfastly stand with those in pain.

If I built a wall around her, she would bring it all inside.

It’s not sweet or noble. It is who she is. It will hurt her.

My Rescue Rose.

The Waiting

We know how to wait. It’s what we do between hurrying.

This time the outcome will be based on what others do.

In other words the outcome is out of our control.

That’s the tough part. We can take the waiting, but we want control.

Rose can only wear a mask for herself, she cannot wear one for someone else.

I have only one vote. I cannot vote for those who ignore red flags and science.

We are both experiencing countdowns. We are both anxious.

Rose is watching the Covid count at her university slowly creep up.

I am watching with dismay as political signs against science surround me.

We are both feeling like outliers. That is nothing new for either of us.

We see what others do not want to see because the truth is scary right now.

But we both have had to see what is real because that’s how we survived.

Fiction would not have saved us.

Reality has a hard, cold face but always tells the truth.

So we both are waiting for a result.

Hoping for good outcomes, but seeing the bad signs.

Trying to stay in the present as an uncertain future creeps closer.

Flow

Rose’s Resilience

While many parents are worrying about how their students will adjust to shifting to all online classes again or being sent home from college again,

I am focused on supporting my mother, sister and Charlotte, the rabbit, through our time of grief.

Why am I NOT concerned about Rose?

Rose has earned resilience. Rose knows isolation. Rose knows home-schooling. Rose knows disappointment. Rose knows changing plans. Rose is practical.

What I also know is she is at the university helping others, giving pep-talks and finding humor in the unusual situations the pandemic presents.

Rose’s resilience is one of the few gifts from epilepsy.

Once you’ve handled truly big challenges, you learn to roll with the punches.

She will navigate her way through this unusual time because she is used to the rocky, curvy roads. She expects to pull the hills.

There were no easy paths in her past.

I am super proud of Rose for her grit.

Another Mother/Flower

Seizure Mama and Rose: An Epilepsy Memoir: Flower Roberts, Joshua Holmes: 9781670811141: Amazon.com: Books

The Crystal Ball of Experience

Sometimes experience ruins the surprise.

It is like a crystal ball.

A ‘been there, done that’ , deja’ vu kind of thing.

It is an advantage of being old, but it’s like reading the last page of a book first.

Most of the time this is a good thing,

but sometimes it is a spoiler.

You want to hope for a different outcome,

but you know it will be same old, same old.

Sometimes I want to erase my memory like a chalk board

and let something totally new get written.

I know this is optimistic.

I just want change. The past did not work so well.

Could we please restart with a blank slate and a fresh outlook

and start again with faith in each other and kindness in our hearts.

My crystal ball has clouds in it.

I want a clear future. Don’t you?

Flow

On the Move

Think of us tomorrow when we let Rose go again.

She came home last spring when the university closed due to Covid-19.

We are taking her back tomorrow.

She is supposed to stay until Thanksgiving. No fall break.

This is an experiment. I am a scientist.

My prediction is the virus will win again.

Not because it is strong and smart, but because we are weak and ignorant.

Young folks cannot see very far. They live in the now.

They hate rules and love risks. That is the great part about being young.

I miss that.

This virus is invisible. Young folks are invincible.

Pandemic protocol is stifling.

I know Rose will be as safe as anyone there.

But a chain is only as strong as its weakest link.

So think of us tomorrow as we boldly go into an experiment

that is most likely doomed to failure because of others.

Freedom has its costs.

We cannot get to the other side of this pandemic without paying our dues.

We are on the move and so is the virus.

Flow

Be Careful = Be Fearful

As your child walks out the door, say something besides “Be careful.”

“Have fun. Try something new.  Have an adventure.”

Be careful means be fearful.

You are giving them a spoonful of fear each time they leave.

This is not medicine, it’s poison.

During the times they are crawling along on all fours with real fear,

your spoonful may be the last straw.

Your fear is not a blessing, it’s a burden.

Now that we have rampant racism, a pandemic and a divisive political climate

do they really need your fear of storms, traffic, snakes, water, poison ivy, bees …?

Keep your fear to yourself.

MY FEAR STOPS HERE.

I will NOT pass it along to Rose.

She is going back to college next week. She has masks, hand sanitizer and disinfectants.

She knows pandemic protocol.

When we leave her, I will NOT say “Be careful.”

I will say “Have fun. Try something new. Have an adventure.”

because that is what I truly want her to do.

Seizure Mama/Flower

Fear

Let’s talk about the big F-word.

When I look back on my life of fifty-nine years,

it is the one thing that I have constantly wrestled with.

I know fear very well. It is not my friend. It never was.

Fear has not protected me from anything. It has prevented me from being free.

If you are afraid of lightning, it will still strike you anyway.

Fear changes nothing but you.

If you want to be cautious and avoid being struck during a storm that is different.

If you are scared of death…guess what?

You are still going to die.  We all are.  No point in being afraid of the inevitable.

I have fought fear a million times. I will never let it roll over me lying down.

This past week I have experienced one of the things I have feared most.

I watched my precious father die of cancer.

It will take time to process his passing. He was so loved. It was horribly painful for us.

I quietly waited beside his bed in the mornings.  My sister and mother stayed evenings.

My heart is broken. My soul is shaken. My family is no longer whole.

What good was all that fear?

Fear of his falling. Fear of his cancer. Fear of my failing to help him.

What a waste of energy!

Fear is a foe, not a friend.

Do not welcome it. Do not allow it to stay around.

It will steal your joy. It will hold you back.

Fear won’t change anything but you and your attitude.

Fight the fear.

It gets in the way.

Be free of fear.

Be fierce.

Love,

Flower

 

Now

I have spent the past weeks sitting beside my daddy as cancer wins the war.

Why am I telling you this? For sympathy? To make you even more sad? NO.

I am learning about life as I watch it slip away.

I am no stranger to sitting around in hospital rooms. Neither are you.

This time it is different.

I am totally in the NOW.

I am not worrying about medications. I am not planning a future.

I am not making lists. I am not researching treatments.

I am sitting beside my daddy watching him breathe.

It’s been like hours of meditation.

I am paying attention to every detail like a researcher or reporter.

Totally immersed in the moment.

Coming from nowhere, going to nowhere.

Just here.

Now.

 

Flow

GIRK channel activator can provide potential treatments for brain disorders – EpilepsyU

https://epilepsyu.com/girk-channel-activator-can-provide-potential-treatments-for-brain-disorders/

I know this is full of scientific terms. If all the drugs that have failed you so far affect the sodium (Na) channels, you may want to ask about trying a drug that involves the potassium (K) channels instead.