Handling the Hyper-emotional Events

Whenever something bad happens, we dread how Rose will respond.

We wonder whether she will explode or implode.

There is no moderate middle ground emotionally.

Rose has to be made aware of sad events slowly and gently.

It’s like we must postpone our own sorrow and grief to navigate hers.

I am not sure why this is.

I know hyper-emotional reactions is part of TLE(temporal lobe epilepsy), but we never found her seizure source.

Is it her medications? The proneness toward depression? The smallness of her world making everything bigger?

I do not know the cause.

I only know that a big wave is coming.

I hope I can save my Rose and myself.

Mercy!

Flower

 

 

 

 

We Take Turns Having Meltdowns

Rose and I have been doing this ‘Stay at Home’ routine for decades.

So we have a survival skill set that most families don’t have yet.

We know how to share our space and stay out of each others’ way.

I have the house during the day, she has it at night.

I shop and leave items in a wagon on the porch,

she decontaminates the purchases before bringing them inside.

Our overlapping awake-time is cordial.

We take turns doing laundry and being in the kitchen.

We also take turns having meltdowns.

My turn was Thursday, hers was Friday.

We know to leave the scene to spew.

Others know to let us go.

Any attempt to control us would be equal to standing in front of a speeding train.

It’s been tough being stuck at home again, but now the whole world is stuck at home too.

I am thankful for my beautiful oasis/prison home with enough food and water.

I am thankful that we are all well and we have medications that work.

I always return home after my meltdowns with a grateful heart.

This pandemic is tough. Epilepsy is tough.

But it is spring and I have a family that loves me.

Rose knows this, too.

So let out your frustration.

Spew if you must.

Then look for the hope.

A little hope is a powerful thing.

 

Love,

Flower

Holding the Line

I would like to have spent the day in bed in the fetal position.

My struggles are many.  My worries are many.

But I am a mother and wife and daughter and sister.

Being a fetus is not in my future.

I have to hold the line.

My strength prevents further damage to my family.

I cannot let things fall apart.

Putting them back together is too difficult.

You understand this don’t you?

The plastered smile and postponed tears, the pumping heart the pushed down fear.

Be strong Another Mother.

Hold the line Another Mother.

WE CAN DO THIS!

Why?

Because love makes us crazy strong.

Ferocious and fearless.

Look out trouble!

Here comes Another Mother.

 

Love,

Flower

 

 

 

Extra Effort at Everything

Since I always tell you the truth, I think you should know

extra effort at everything will be required.

Before you sigh and feel low, you must know

this will be a good thing.

When the pampered people give up and whine,

the tenacious, tough folks barely flinch.

They leave the sprinters behind as they run their extra mile.

Your job, Another Mother, is encouragement NOT enabling.

Stand back and watch them rise strong.

Seizure Mama

Poison People

This is Story 25 in our book. I thought of the poison part of this chapter as I snoozed a poison person on facebook. I have a three-strikes rule. If I snooze someone for negativity three times, I unfollow them. There is enough negativity in the world without having it delivered to my desk. No apologies POISON PEOPLE. Protect your psyche. You have enough struggle on your plate with epilepsy.

Dinner for Two

When the seizures were relentless, we never left Rose. EVER. This is no exaggeration. I stayed with her almost one hundred percent of the time, even when her dad was at home. I was a scared steadfast sentry. Once every few weeks I would go out shopping by myself. It seemed strange that the world was going on as if nothing was wrong, while we stayed home waiting for the next catastrophe.
On one of my rare outings, I ran into a mother of a boy who was on my son’s former coach’s pitch ball team. I had not seen her in years. She was wealthy with a healthy son. She proceeded to bend my ear about all her problems. They had to clean their rental condo at the beach themselves. Her parents needed her to drive them to doctors’ appointments. She continued to list her problems for many minutes. I do not know why I did not walk away. This was my brief period of time out in the real world and I was standing in a store listening to an acquaintance complain.
Our world was tiny and tense. Rose’s dad and I were not a couple, we were a tag team. Somebody had to work. Somebody had to shop. I was holding down the fort single-handedly while my husband and son went on and went out. This was a tough time in our marriage. We were Rose’s parents and protectors. We were mom and dad, not mister and missus. There was never a chance to be alone together. We were on duty twenty-four/seven.
We expected Valentine’s Day to be more of the same- the four of us, at home alone. But my sister-in-law had different ideas. That evening she and my brother-in-law and nieces appeared at our door. She had cooked a romantic dinner for two and brought pizzas for everyone else. As they ate pizza in our library, Rose’s dad and I sat at the kitchen table alone, enjoying a delicious meal. It was hard to know what to say to each other. Our conversations were always about the children, planning the next doctor’s appointment, discussing drugs and side effects, planning a school project, or scheduling our son’s transportation to races.
What does one talk about during the eye of a tornado? We mostly enjoyed our silence as we listened to the chatter in the next room. We were thankful to have family and happy to be together but not alone. That romantic dinner was a shot in the arm, a booster to keep us going as a couple while we struggled as a family.

Seizure Mama speaks to parents:

First, do not be that woman in the store. While you are standing there bombarding someone with all your issues, they may be silently suffering with more problems than you ever dreamed of. Don’t be a “Debbie Downer.”

Second, you are not just your fragile child’s parent. You have other children, siblings, parents, friends, and coworkers. These people need you and you need them. Let them know how to help you. They want to, but are not sure what to do. When Rose’s seizures occurred frequently, the families in our church took turns bringing us meals. We loved seeing our friends and doing a little less cooking and shopping. Rose got to see folks other than her tense family.

Lastly, a divided house can not stand. You need to stay married. Don’t keep your child as a barrier between the two of you. Someday your baby will grow up and move on, and two strangers will be sharing your house. You are not just modeling parenting; you are also modeling a marriage.

 

Crunch Time for Rose

It is that time in the semester when students are pushing toward the finish line.

Papers are due, assignments need finishing, exams must be prepared for…

What got me through that was something no student has right now… study buddies.

A sense of comradery helps one attempt what seems impossible alone.

Esprit de Corps

All the online students everywhere are depending on their own grit right now.

Exams are next week with no study buddy or midnight oil companions.

I am thankful that Rose is an experienced student.

She has done the impossible online before. (British Literature)

Rose will get through it.

It’s those millions of other students that worry me.

Will this be the end for them? Will they give up? Will this semester be a waste?

Partial refunds were given. Choices to make grades P/F or U/S were offered.

Not only will businesses need a jumpstart, I think colleges will also.

If you know any students during this lonely semester,

offer a little support and encouragement. Maybe some chocolate and Red Bull.

Crunch time is never easy, but doing it alone may do them in.

Let’s not let this be the last straw for some lonely student.

They may be a future nurse, doctor, postal worker, chef or scientist.

They will be needed in this new future we are facing.

 

Love (without hugs and kisses)

Flower

Still Here, New Worries

Rose and I are adjusting to the old normal, which is now the new normal.

I have the day shift in the house. Rose has the night shift.

I garden, sew masks, cook meals, clean more, do laundry, read nonfiction and worry.

(floweralley.org is my garden blog)

Most of my concerns are not new.

My parents need lots of help, my sister does most of this and is weary.

Rose is fine, now that we have her medicines covered. No seizures in over a year.

My husband is still working too hard.  He had a Covid-19 scare. It was a wake-up call.

I am sure it will not be the last for him. Let’s hope they are all false alarms.

So here is the ugly truth.

I am a dependent. I do not have my own income or insurance.

I never planned this. I trained for a career. I started a career. I had a career.

Rose was more important.  She is still more important.  Always will be.

The Covid-19 scare left me feeling vulnerable.

What if???   No income, no insurance…no medicine.

Rose’s medications cost over $100,000 per year. Our insurance covers that cost.

What will happen to us if something happens to him?

The cost of epilepsy is high.

That’s the ugly truth.

How do we change that?

Keep talking.  Keep sharing your struggles.  Keep telling your stories.

Maybe the right people will hear us.

 

Seizure Mama/Rose’s Mama/Flower Roberts

Do NOT worry about us. We will be fine. We have been, we will be, we are FINE.