Author: Flower Roberts

We know fear that takes your voice and scrambles your thoughts. We have heard news on the phone that transports everything but your body somewhere else.

One of those times was four years ago yesterday. I will put the links below. I have written about it. Not all has been published. We are still processing details.

But the word we used last night on the phone was GRATEFUL.

How does one get from trauma to grateful?

HELPERS

These are the folks in my prayers last night. I messaged one. The others I barely knew at the time. So I will tell their roles instead.

How each person played a role in saving Rose.

Rose’s suitemate heard Rose scratching on the bathroom door and opened it to find her on the floor.

Rose’s RA was alerted and called 911.

EMTs transported Rose to the local hospital. During the ride one of them switched the seizure diagnosis to stroke.

I called a girl on her hall who told me she saw Rose leave on a stretcher.

I called Debbie, Rose’s friend’s mom, who went to the ER with her husband Tim.

Debbie called me from the ER to say Rose was refusing the tPA shot. I screamed “Take it!” into the phone. It was given.

Rose was transported to a bigger hospital. Debbie and Tim went, also.

Rose’s dad and I had been driving in the dark. We got updates from Debbie as we traveled. Rose’s left side was paralyzed. She was talking. She was laughing with Debbie.

Tim told us which exit to get off on, which road to take, which door to enter. All we did was follow his calm instructions.

We saw her. She was moving and talking.

She did her assignments in ICU. She emailed her professors. She refused to stay in the hospital. She returned to class a week later.

Rose graduated two months later.

Was there damage? Damn straight there was.

Is she 100% back? Not yet.

Is she stronger. Yes! Are we?  In our own way, yes.

It took two years to go up and down on drugs that did not work.

Another six months to level off and stop the seizures. A year for her to drive again.

She lost playing the piano and Spanish. Small potatoes compared to other possibilities.

There was a pause on the phone last night. We were all tranported for a moment to that terrible night four years ago.

Then we came back to the present.

GRATEFUL

Seizure Mama/ Flower Roberts

An Up-date on Rose

The Fear Face

Shock and trauma cement memories even if you need to forget them. I call the memories of epilepsy episodes the seizure ghosts. I am home alone right now. This house is where it all happened. We gave her seizures names based on where they occurred or what happened during or after them. The memories come back to me everywhere here.

‘The Recorder Seizure’ happened while Rose was standing by the kitchen table. The ‘Brownie Seizure’ happened in a chair at the table. ‘Blood on the Rocks’ happened at the woodstove. The ‘Top of the Steps’ left a dent in the wall. ‘Tutor at the Table’ occurred in the library.

‘Swinging the Gate’ was in the play yard. ‘Cornea in the Corner’ was there as well. ‘Down in the Shop’ and ‘Down in the Rocks’ were inside and outside the workshop. Those were both scary.  ‘In the Shop’ was traumatic because we had to use our last two rescue drugs to stop one seizure. ‘In the Rocks’ was long and Rose fell off a bench headfirst and her shoulder looked broken.

‘Down on the Tile’ was bad because her head was between the cabinet and toilet. I could not move her, so I stuck my arm under her head and waited for help.

Alot of times there was no help. Both of us on a floor or the ground waiting for an end.

Our book, Seizure Mama and Rose by Flower Roberts, tells the tales of decades of seizures and what we learned from them. I wrote it to help parents who have their own haunted houses. We get it. Those ghosts are real.

This is where I used to live, this haunted house. I had to leave here. The ghosts stayed.

I want Rose to get out of here.  Does she feel the ghosts? Do they haunt her as well.

Does your house have seizure ghosts? Is it haunted?

Mama

What does it take to transform needy to needed?

Are you struggling to encourage agency in a child that has been enabled and coddled?
Are you now too old, too tired or too broke to keep running block for your fragile(?) child who may now be a teenager or even an adult?

I have been where you are, waiting for agency to sprout from our pampered baby.
I read something interesting in  The Anxious Generation by Jonathan Haidt. Look it up if your child is addicted to the phone and internet. NOW

The life experiment named Biosphere 2 was mentioned. Since I am a biologist and plant collector, the story of the collapsing trees made total sense. In the three-acre bubble of Biosphere 2, all needs were provided. The trees grew tall, but were weak. Because there was no wind, the trees never formed stress wood that could have strengthened them. They had no stress to make them strong. The trees grew up until gravity pulled them down. Gravity cannot be avoided, even in a bubble.

Is your child inside the safety of a bubble of your making? Has your child had the opportunity to adjust to stresses in his/her environment? Have you blocked all wind, stress, anxiety, sadness, struggle?

What happens when gravity starts to pull on your weakling? Are you going to stand there and hold them up? When you die, who will be willing to be chained to your weak, coddled child?

Stress is necessary for the development of strength and resilience. Do not deny them experiences because of YOUR FEAR.

I am not preaching at you moms and dads. I am telling you to put some holes in that bubble. Let some wind in. Get yourself out and let your child see you out in the winds of reality. Struggle in front of them. Let them see that wind can be dealt with. Maybe even ask for their help. Everyone needs to feel needed.

Nobody likes needy. Not the helpless needer nor the over-burdened needed.

They will stay fragile if you do not…

LET THEM GET STRONG.

Rose is 33. Our lessons are still coming. The effects of our mistakes are still lingering.

Pop that bubble ASAP.

Seizure Mama/ Flower Roberts

I do not need to explain fear to you. You live with it in your head and heart. You put it under your pillow to sleep. You carry it in your pocket during the day. Sometimes you forget it and this scares you, too.

I know you will not let it leave you because you think it protects your child. It is part of you “due diligence” protection plan. The armor that is supposed to protect you both from harm.

I will not suggest removing your ‘Mama Bear’ ensemble. But let’s evaluate the amount needed and see if we cannot pare down those defenses to an effective, managable load.

First, your seizure bag. Is there a blankie or two, a bottle of water, several snacks, a change of clothes, wipes for drool, headache meds etc.? What else are you lugging around in it? More outfits for different moods. Snacks for your groggy baby and the crowd that shows up? Hair brush, hair accessories? You are not going on vacation. You are prepping for a three-minute emergency. Lighten that load.

Next, your purse. You have needed numbers stored in your phone..but what if your battery dies or your phone gets broken or lost in the ruckus.? New fear now foiled. You need several written lists that you can pass off to help while you talk to the doc or EMS on your cell.

About EMS they know alot. I am always glad to see them. YOU are still the mama. They are there to assist, NOT take over. Do not be bullied by EMS with EGO.

Okay. Now let’s talk about that fear in your pocket that balloons into a beast. We cannot stop the ballooning, but breathing squares will keep you steady. Look that up and practice at red lights and waiting in the school car line.

Now look in that pocket. How heavy is that fear. From zero to ten? What is your constant level? If it’s a 9 or 10 get a therapist..today. Do not be a Cortisol Queen. It will eventually cause health issues. Then who will will take care of you and your child?

Take out that fear when you are alone. Sit with it quietly. Get some paper and write down everything you are afraid of. List it ALL. Start with your child dying of SUDEP. There it is! Your number one. Name it and claim it. Keep listing until you are empty.

PAUSE

Go back to that list…when you are ready. Cross off all threats that are totally not in your control. Why carry those in your head? Then study the new shorter list.

How can you lessen your fear? By being prepared. Take CPR.  Write instructions and phone numbers and make copies to give to any care givers and family. Keep your phone charged. Assess when you are for an escape plan if an emergency. Middle of movie theater. NO. Sit near the aisle.

Get that fear level down as low as it can go. Get real about the load you are lugging around. Do some more breathing squares. Trust me, they work. Panic helps noone.

You cannot walk around with a level of fear over 6. Aim for 5 and give yourself that extra point for all the uncertainty you must handle.

Do this for you. PLEASE

This is your life, too.

Seizure Mama/ Flower

Our southern state had two historic snowstorms in the past two weeks. Many record levels of snow were reported. My Facebook feed is full of pictures of friends in snow with rulers to brag about amounts.

Rose has always been fascinated by snow. Our house has a stand-up freezer which contains Rose’s Snow Collection. Every snow at our house since her early childhood has been documented by a snowball in a bag with the date written on it.

This might sound like a parent’s cute idea, but believe me, I would rather have the freezer space. I did put my foot down and ordered Rose to remove any bags with undiscernible labeling.

I am not sure where all this snow data will end up, but for now it is safely housed among giant packs of frozen chicken wings. I guess the freezer will go with her when she moves out eventually.

Not being folks to stay inside, she and her daddy had many daytime and night-time adventures in the Polaris side-by-side. She shared photos and videos of each outing. I received excited phone calls afterwards to report on all wildlife, including other humans, that they encountered while out and about.

I loved hearing her recordings describing what was being shown in the videos. I found the subjects of her photos interesting as well.

Rose sees the world with her heart. I will share some of her photos with a quick video at the end of her squealing as her dad drifts in an empty marina parking lot.

I am grateful for Rose’s zest for snow and outings in snow. It makes me happy to see her finding such JOY all around her.

That snow collection, however, is another story.

Mama FLOW

GO ROSE!

https://bloggers.feedspot.com/epilepsy_blogs/?fbclid=IwdGRzaAPbToljbGNrA9tOV2V4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHjt0MJ76X7WzJMHVdjoSlmE2TgCSKmrTEvqqiwSx6wbZhHAfk8YaB0aTsVvp_aem_JUVf9eGVdRgSHXST_aFzPw

Something reminded me of this today.

I searched for it to repost it.

Maybe somebody needs to read it tonight?

https://seizuremamaandrose.org/2021/06/09/be-brave-then-and-now/