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.

 

Our Mission

Our mission is to get our message out to other mothers.

For every book I sell, I earn enough to mail out three.

My goal is to mail TEN each month whether I make any money or not.

We can afford that without selling anything.

Let us know where they need to go.

We will do the rest.

Thanks folks,

Flower

 

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.

 

 

 

 

Hell: Round 3

Do not worry about us. We will be fine.

I will try not to worry about you.

I know I will survive.

This is not my first battle, you see.

I have enough fire in me to light up half the planet.

That’s why my sister calls me Snapdragon.

I would like to blame it on the PTSD, but it happened long before that.

Some day I will tell you that story.

Stay safe.

If you want to see why I am the Flower,

visit my other blog  floweralley.org.

Goodbye for now.

Flower

Isolation Irony

Rose is home from college due to the COVID-19 pandemic.

So instead of being isolated by her epilepsy, she is now isolated by an outside disease.

My dad is under “lockdown” ( due to COVID-19 ) in the rehab center following a cancer surgery in December.

So he is now in there alone without us to care for his many needs.

All this isolation to prevent the spread of an invisible foe.

I hope and pray we miss this new and vicious virus.

On the other hand I feel in my element.

I have been studying diseases for decades.

Oh, if only I could jump into the fray instead of sitting here alone

educated and isolated.

Everybody’s Mama

 

 

Book for EMU Prep

If your child is going to spend some time in an Epilepsy Monitoring Unit, you might use this book to prepare them for their stay.

All the wires, monitors and other equipment might be a little scary.

This book was written by a young man who wanted to share his lessons learned in an EMU to help others get through this testing experience.

All Eyes on Me by L. Brandon Magoni is clearly written and includes photographs.

IMG_1373

I think this book would be useful to keep on hand at neurologists offices and epilepsy centers.

Good job here Brandon Magoni.

 

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

 

 

 

 

 

Seizure Mama and Rose made it to the Best New Epilepsy Books
I’m happy to announce that my book, “Seizure Mama and Rose: An Epilepsy Memoir”, made it to BookAuthority’s Best New Epilepsy Books:
https://bookauthority.org/books/new-epilepsy-books?t=d39069&s=award&book=167081114X
BookAuthority collects and ranks the best books in the world, and it is a great honor to get this kind of recognition. Thank you for all your support!
The book is available for purchase on Amazon.