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.

Our Haunted House

We have all done our best.

We respect each other’s space.

No one is in charge of anyone else.

Cohabitation. Coexistence.

We thought we were doing well, her dad and I.

But Rose says she can’t come home.

This house is full of ghosts.

Fear ghosts, seizure ghosts, sickness ghosts, struggle ghosts,

stains of sadness in every room, the carport, the yard…

We are not allowed to change anything in her room/The Rose Museum,

but she says can’t come back here.

I hate to admit this, but I get it.

The pain is still here, lurking but fading

in this haunted house.

Flower

https://seizuremamaandrose.org/2020/02/21/the-rose-museum/

 

Stepping it Up

I hate to admit this to you. Especially you.

I wanted to step back. Take a break. Catch my breath.

But that is not what has happened. You have left the battle.

It is required that I STEP IT UP. The girls need me!

There are still struggles. There is still injustice and bias.

I can’t rest now. You need me to keep working.

So back I go, into the fray.  Fighting for attention and help and understanding and equality.

I cannot leave the battle. I have a daughter.

So another old lady warrior gets back on the front lines.

I’ll do my best. Bless you RBG.  

Flow

 

Stop The Music

When Rose was in eighth grade band, the middle school band was invited to join the high school band to play during a football game. Rose sat with all the other trumpet players in the band section of the stadium.
Rose’s father and I sat in the adjacent section where we could keep an eye on her. We were concerned because Rose hated loud noise. We had instructed her to take out her tiny hearing aid while the band played. This hearing aid was red and the size of a kidney bean. It cost thousands of dollars and was not covered by insurance.
At some point during the first half, we noticed a disturbance where Rose was sitting. She was having a seizure. I rushed down to her side. The band director gave the other band members the okay to go take a break. This made it easier for the EMTs to get to us. Rose stayed unconscious for quite some time after the seizure. Her dad went to get the van and drive it up to the back of the stands.
It was about then that I noticed that Rose’s hearing aid was not in her ear. I searched around her. There was no little red bean. I went through her pockets. No bean. The EMTs joined in the search. We made quite a spectacle. Unconscious Rose, her mama, and a bunch of men in uniform scouring the empty stands.
The band members returned from their break. The band leader asked if I minded if they played some music. The music resumed. Rose aroused. A group of men helped haul Rose up the stadium steps to the van. As I followed them up the steps, a woman tapped me on the shoulder and asked “What were ya’ll lookin’ for down there?” She was curious about the lost item, not the unconscious girl. I guess asking about Rose would have been rude.
When we got Rose safely into the backseat of the van, I informed her dad that her tiny hearing aid was missing. I searched her pockets once more. Tucked down in the corner of her jacket pocket was that tiny expensive bean. I was so relieved and happy.
As we drove away from the school, Rose’s dad turned to me and asked, “Other than that, Mrs. Lincoln, how was the play?”

Seizure Mama speaks to parents:

It may be futile to try to keep your child’s seizures a secret. Rose’s condition was known to everyone at church, at school, and out in the community. We never tried to hide her epilepsy. There was no point in it. It went with us wherever we went, whether we liked it or not.

Your Present Our Past

I awoke thinking of you. You are on my mind.

My struggling mothers keep reminding me of our past.

You are where we were, that hard place, that dark tunnel.

Preparing for hospitals and tests. Trying new drugs.

Hoping with all your heart that this will stop the seizures.

You may be in different states and across an ocean, but we are right there.

Your messages take my breath and make me cry.

I feel your pain and know your angst.

I wish I could help. I have no advice. All journeys are unique.

Just know there is Another Mother who gets it.

Your present is our past.

My sincere hope is that all our futures are seizure free and worry free.

Seizure Mama/Flower Roberts

 

 

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