Tag: Seizure Mama and Rose

Ugly Doll Rescue (Re-posted for Mother’s Day)

The first time this happened was in a giant toy store.

We looked down into a tub full of stuffed animals

to spy a small doll in a red checkered dress with messy blonde hair.

Maybe it was that messy blonde mop that made Rose relate to this doll.

She picked it up and turned it over.

The mouth was twisted and the eyebrows raised.

It was an alarming face. I remember thinking that it looked like it had had a stroke.

Maybe I said this. I do not remember.

The doll never went back in the tub. She went home with us.

Her name is Crystal.

The next one was not as alarming.

She had a cute little head band and outfit.  I think the facial expression was the manufacturer’s attempt at a yawn.

Her name is Dorothy Gale.

Then came the pouty-faced brunette with tear streaks down her face.

She was unhappy in the store. We must take her home, so she will quit crying.

Chevrolet is still crying.

The fourth was the tiniest one. She is was wearing a bonnet.

Her smile is just a little crooked.

She has eyes that look as though she just finished crying, but stopped because she spotted someone she loves. It melts your heart.

I do not remember her name. I am sure Rose could tell you.

There was one last attempt at a rescue.

It was in a toy store in a mall.

Rose picked up the doll off the shelf.  It was supposed to talk, but when Rose pushed on her tummy, a horrible, board-scratching shriek came out.

Rose dropped the demonic doll and ran out of the store.

That ended the mission of rescuing ugly dolls.

This post is in honor of Rose who just spent her first night in a college dorm.

GO SAVE THE WORLD ROSE!!!!!

SEIZURE MAMA

Original post January 2018; Re-posted May 2019.

 

 

 

Epilepsy Again

Rose made it three years without a seizure. An EEG was done. It was normal. She was weaned off of drug 3S during the summer. She grew taller, quicker and smarter. We felt this  childhood epilepsy was behind us. This was due to all those ear infections and fevers. She was growing and thriving. We were so relieved.
Rose started third grade without much worry. Everyone involved with her care knew her history. We shared her medical information as a precaution. She had a very fun teacher. She was in a classroom near the office. She was happy. We were happy.
We were all getting into our own grooves. This lingering fear had loosen its hold on our family. I restarted my garden art business and began scheduling shows. Her brother was now in middle school. She was at her school without her big brother. No worries.
In mid- November, I had a two-day art show in a neighboring town. It was about forty-five minutes from Rose’s school. I can confidently say that both her father and I, both at once, had not been this far from her since her diagnosis. Anytime I was away from her I wore a beeper and carried a bag phone.
The week of the show, Rose got another ear infection. She had hoped to go to her first sleep-over at a friend’s house just across the street. I was preparing for the show. Everyone was busy, too busy.
We kept Rose out of school on Thursday to recuperate and rest. She seemed to feel better. Friday morning was frantic. I gave Rose some over the counter NSAIDs and her antibiotics. I also sprayed her nose. All this was by her ENT’s directions. We thought we had covered all the bases. My gut was still screaming. This was too much at once. I did not have a good feeling about the two-day show, the sleep-over and especially being that far from Rose.
My husband and I delivered our two children to their separate schools. Then we headed to the town of the show in separate vehicles. He was to help me unload into my booth and immediately return home. As we were unloading my heavy pieces of garden art, my beeper went off. I looked at it. It was the number for Rose’s school with a 911 at the end. This was our agreed upon signal to drop everything and run. I am so thankful we had this signal in place.

I explained to the artists in the booth beside me that we had a medical emergency. They assured me they would pile my art under the table and cover it. We jumped in the truck and my husband drove as I called the school.
Our friend in the office answered the phone. He said “It’s Rose. Get here quick.” I explained that we were headed up the interstate, but were forty minutes away. Our hazard lights were on. I was waving a white sheet of paper in the windshield. Still some people refused to pull over into the right lane. At one point we passed in the grass and lost a hubcap.  The beeper kept going off.  The calls kept coming.  “What hospital do we take her to?”  “How far away are you now?”
My one question, ” Is she still breathing?”

My Window to the Past

 

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I have spent a lot of time looking through this “window.”

It is a magnifier that I use to read Rose’s medical records.

When I bend over to read through it,

it feels as though I am peeking through a window

into her past.

No videos, no photos, no sounds

Just words

The names of doctors and drugs, test results, descriptions of events…

I go through this tiny window back into hospitals

back to the fear

Trying to find the words to make sense of the suffering.

Searching for answers to share.

Desperately seeking the X on this map to find the terrible treasure,

so that it can be dug up and destroyed.

Looking back for the where and the why

and finding our stories to keep you company

while you wait

on the other side of this window.

SEIZUREMAMA

Be Brave?

Rose had seizures everywhere.

On these many occasions, I plaster a smile on my face and look folks in the eye as they glance and walk by.

Nothing unusual about a grown woman sitting on the floor/ground beside an unconscious little girl.

Rose had a particularly dramatic series in an undisclosed, public location.

As I was sitting on the floor in a hallway, a woman with healthy children walked by, patted me on the shoulder and said “Be brave” and walked away.

I am on the floor. My child is unconscious, again.

Be brave?

Do you tell a person with cancer to be brave?

Do you pat the shoulder of someone being wheeled in to open-heart surgery and whisper “Be brave”?

What choice do we have?

Seizure.  Stop the clock.  Then we wait.

Seizures stopped ballgames, picnics, award ceremonies, bible school, band practice, ball practice, dinners in restaurants.

Stop. Wait. Hurt? Get up.

Stop. Wait. Hurt? Get up.

I am tired of being brave.

How about sitting on the floor with me?

Wait with me.  Down here on the floor.

Anchored to this spot until it’s over.

Until she comes back to me.

Stay and help us up.

If you really care, don’t walk away,

leaving us to be brave,

down here,

alone,

afraid.

SEIZUREMAMA

 

 

 

 

 

 

 

 

Are you Shoveling Sand?

I need to confess this to you, because you are probably doing it, too.

I am a “sand shoveler.”

One of Rose’s doctors used this analogy about one of her treatments.

He said, “We were shoveling sand against the tide.”

It was one of those moments that got frozen in time and tattooed into my memory.

Not the kind of description you want to hear about your child’s treatment.

Imagine for a moment, standing in the tidal zone, frantically shoveling sand

as it shifts anew with each crashing wave.

No matter how many shovels full that you dig, no matter how big the shovel,

you will NEVER make any progress.

But you just can’t stop because this sand needs to be moved and these mountains need to be moved because they are in your baby’s way.

You insanely keep going, because stopping would mean surrender.

Tenaciously fighting a losing battle.

I have learned to periodically pause and assess my effectiveness.

Here is today’s stupid example of my shoveling sand.

There was a smudge on the glass door.

I wiped and scrubbed over and over, until I figured out it was on the outside of the glass.

No matter how much I cleaned the inside, it would never matter on the outside.

Now back to you.

Are you trying to earn a seizure-free day?

Do you have a list of hoops to jump through?

Take all medications on time.  Always have nap time.  Eat healthy.  Drink enough water.  Don’t get too hot or too cold.  Avoid emotional outbursts. Don’t get too tired. Avoid germs.

Jump. Jump. Jump.

SEIZURE.

Blame. Guilt. Sadness. Try harder.

Guess what?  You can’t fix this yourself.

The right medications and avoiding known triggers is the only way to improve this.

Shoveling sand won’t do anything but break YOU.

Washing the wrong side of the window will never remove the smudge.

If your child had diabetes or asthma the treatments would be straightforward.

Epilepsy is a mysterious beast.  It’s too complicated to kill.

So we kill ourselves instead.

Because we have to do something!

STOP shoveling sand!

SEIZURE MAMA

 

 

 

The No-Hope Diagnosis

This is part of the story I have put off writing.

Maybe if I get this one out of the way, I can finally finish this book.

Rose was nineteen years old at the time.

She had experienced febrile seizures since she was eighteen months old. Her first real seizure without fever was at age four.

She had tried eleven different medications in many different combinations.

In June of 2012, we took Rose to a Mayo Clinic.

She had been seizing and getting injured.  She was home-bound the last half of her senior year in high school.

She was in danger. We needed the best doctors in the country to study her case.

We went.  Many tests were run.  We hoped that we would have a clear picture of what was happening in her brain when this was over.

All her records were taken…pages in notebooks, scan films, discs of MRI’s and CT’s.

We were hopeful. It was time to slay this dragon.

The doctors would meet in mid-July to collaborate on her case and call with results and recommendations.

We waited impatiently to hear from them. We were on edge. Were we headed into a surgery?  Would we be testing a new drug?

When the call came, it was not what we had hoped for.

There were a lot of percentages rattled off over the phone. At some point my brain switched off.  All I remember is the no-hope number of 5%.

If they opened her skull and placed electrodes on her brain there was a 50% chance of finding the source. If they found the source and removed it, there was a 50% chance of improvement, along with a 2% chance of morbidity and a 5% chance of serious complications.

The final percentage of any chance of improvement was 5%.

I have this in writing.

Five percent is way too close to zero percent.

I cannot remember how many days that I walked around in a fog.

BUT THEY WERE WRONG!

The best and the brightest experts in their field still aren’t God.

Was it the new drug from Germany?  Was it cutting out red dye #40?  Did something happen during that slow-motion seizure that dammed up the flow through her brain?

We really don’t know why she improved after that.

So if you get a no-hope diagnosis, remember Rose.

There is always hope.  Even if it is just 5%.

SEIZURE MAMA

Aftermath of Enabling

For this book to serve its purpose, I must be totally honest.

I am writing it for other parents of children with epilepsy.

This means laying bare the goof-ups.

There were many.

I was so determined to run block for Rose, that I didn’t allow her to fall or fail.

I wanted to compensate for all the extra challenges by doing too much for her.

The term is enabling.

The effects are still being felt at home.

I am an unlimited resource in her mind.

Her wallet, her taxi, her maid, her slave..

In my mind, my time of sacrificial lamb is over.

I have gotten her where she needs to be.

It’s up to her to keep up.

This is not an easy place to be.

There will be stories.  They will be ugly.

Sometimes, when you bend over backwards, you break.

I am NOT going there,

and neither should you.

SEIZURE MAMA

 

 

Peeling Off A Drug

Every SEIZURE MAMA post I have written so far has been about the past.

This one, however, is occurring in “real time.”

I wanted to share a tiny part of our twenty-four-year journey with you,

so you could get a sense of our anticipation and anxiousness.

(I DO NOT WANT FEEDBACK ON THIS. You are an observer only.)

 

Rose has been on this particular drug for twenty-one years now.

It has been her friend and her enemy.

When all other combinations failed, she went back up on this one.

It helped with the seizures, but there were costs.

Everything slowed.  It was sort of like changing water to molasses.

Why now?  She is working and driving.

Her grades were good for her first semester away from home EVER.

Good is the enemy of great.  Things are good, but the struggles are still here.

Think of it as always having to walk uphill…never on level ground…never downhill.

So STARTING TOMORROW, we will be peeling off this friend/foe drug.

It will not be coming back for various reasons.

If there is a seizure, one of her other drugs will be increased.

It is a tiny dose, not even in therapeutic range.

But it has been her security blanket medication.

Rose’s brain has had this molecule for twenty-one years of her life.

She is scared and excited.  She needs this.

Damn she is brave!

SEIZURE MAMA

 

Gilligan at the Lab

One of Rose’s early seizure medications required monthly lab work to check blood levels.

She has always been a passive patient. I did not expect her to resist any treatments based on prior experience.

So I was surprised when we had a struggle getting some blood drawn at the local hospital.

We waited in the waiting room to be called. I thumbed through magazines, while Rose sat near the television.

When her name was called, I picked her up to head back to a room.  She squirmed, so I switched her to my other hip.  The lab technician was a middle-aged man. Since she was small, she was positioned lying down on a table for blood to be drawn.

“No, wait!” she said.

“But we need to get your labs done. It’s our turn.” said I.

“No, wait! ” she yelled.  Rose began to squirm and cry and point at the door.

The man asked if he should tie her down to the table. Now, mama wanted to yell.

I explained that she usually did not resist labs. I also pointed out that if we “tied her to the table today”, we would have trouble just getting her in the room next time.

I took Rose back out to the waiting room. I calmly resumed looking at magazines, she went back to the television. I nonchalantly told her to let me know when she was ready to get her labs done.

I kept peeking out from the magazine, watching her. What was different about this time?

It was not long before she came and stood beside me. I glanced up from my magazine.

“Ready.” she said.

I informed the receptionist at the desk that we were ready to try again.

Her name was called. We went back into the room. She lay on the table. The blood was drawn without incident.

As we were walking back through the waiting room to leave, Rose pointed to the television and said, “No more Gilligan.”

She did not mean she wanted to “wait” to get the blood work done.  She wanted to go back to the waiting room and finish watching Gilligan’s Island.

SEIZURE MAMA

The Hard Parts

Since I am writing this for other mothers, I must be totally honest.

There are parts of Rose’s story that still make me weep.

To write this book, I have most of her medical records. Now that she is an adult, she must get some that are missing from our files.  There are some gaps that need to be filled in.

We have thousands of pages and hundreds of films from scans. We have calendars and charts and spread sheets. We were desperate to keep every shred of information in case it held a clue to her cure.

I refer to these records before I write a story. I do not put in all the details. It would be cumbersome to read.  I do not understand much of the terminology. It was a constant struggle to take in all the information.

Sometimes, when I read these pages in the records, it is like I am seeing it for the first time.  I guess I just could not process everything while all the trauma was going on. I read  from her last tests on Friday afternoon. I read them until I could not see through my tears. I had to walk away from the desk.  It was like all the light left the room.

I bet you know what that’s like.

Rose is so brave. She marches straight toward the future with unwavering courage. I must be brave too. Not for me, but for you, Another Mother is your name.

I have to see this through for you. So I will keep going. You may need us.

So I will return to 2002 and  2012. I will finish what we have started. It gives us purpose. I promised Rose that I would write down her stories to share them.  Her job now is to get on with her life. She is fearless, so I must be, too.

SEIZURE MAMA

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