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.

Dear Mama Bears

My thoughts are always with you.

We have been busy taking care of my dad in the hospital.

Now he is home. My 88-year-old parents do not have internet.

I do not blog from my phone because it is difficult to see.

Rose has been helping with my dad.

She is concerned about getting back to school in the fall.

I have been sewing Covid masks and gardening.

I have not and will not forget you, although I may disappear for a bit.

Do not let epilepsy steal your joy.

Grab every little blessing with both hands and an open heart.

My seizuremama email is not synced with my phone any longer. (No time to figure it out.)

If you need me, email b12alley@yahoo.com or comment on either blog.

floweralley.org

seizuremamaandrose.org

This is NOT a goodbye.

Stay strong Mama Bears.

Remember to take care of yourself, too.

This is a marathon, not a sprint. Pace yourselves and ask for help.

 

Seizure Mama/Flower Roberts

https://a.co/5Mu5va6

https://a.co/5Mu5va6

When IT Comes Back

I was reminded by one of my other mothers how I felt

when IT came back.

A seizure happens after a long seizure-free spell.

You are thinking that IT has finally left her alone.

It throws her down while you are not there.

She is injured, you are shaken.

At some point we have accepted that IT will be back.

We will not let it steal the time in between.

We will do what we want and be who we want

until IT returns.

Getting back up is the most important part.

IT will NOT keep her down.

Flower

Attached is the post I wrote when Rose had her first seizure while away at the university. I was sad and angry and scared…

https://seizuremamaandrose.org/2018/11/12/battle-ground/

 

She called me a Helicopter Yesterday

Rose called me Helicopter yesterday.

I cannot win.

If I give her space, I am avoiding and ignoring her.

If I stay in the same room, she is irritated on my sighing and noisiness.

I have been distracted and busy and frantic with my own tasks lately.

How can I possibly be a helicopter now?

I am not.

That’s my point parents.

They see what they feel. She feels crowded by me.

All those years of my being in charge and doing everything are haunting her.

There are ghosts here.

Seizure ghosts, struggle ghosts, pain ghosts and Helicopter Mom ghosts.

The past lingers. It steps on the heels of present. It shapes it.

I am no longer a helicopter mom,

but she still feels me hovering over her

long after I have landed…

or did I crash?

Flower

The Empty Arms

I absolutely cannot bear to see the mother with empty arms.

Holding her ghost child.

Any mother.

Every mother’s nightmare.

Epilepsy has threatened to take my child from me.

My child’s skin color is not a threat to her safety.

No skin color should be a threat to anyone of any age.

The Time magazine cover will chill you to the bone.

Those empty arms.

Lord help us.

Everybody’s Mama