Peter Pan at the Mayo

BACKGROUND: Rose had to go home-bound the last semester of her senior year in high school.  It was a hard call to make. She was very disappointed to not be going to school, but the seizures were frequent and strong. We felt it would not be safe for her or fair to the school.

After the “Knock-out Rose” seizure during February, which occurred in the school driveway during her horticulture class, her face was torn up pretty badly. Her brian and her face needed some time to heal. We all needed a new plan. The drugs she was on were clearly not working. The added stress and excitement of being a senior were adding to the triggers.

We went back to an Epilepsy Monitoring unit near home in May for ten days. We had hoped to get a SPECT scan to pinpoint the source of her seizure activities. We came home without results, which is another story. Because we had taken this step without gaining the needed information. We got a referral to a Mayo Clinic.

STORY: We were finally at the MAYO! We had brought ALL the notebooks of Rose’s medical history and ALL of her MRI films. I had read and highlighted what I thought were the major points in ALL her doctor and hospital records. We had studied her eighteen-year medical history like we were taking an exam on it.

We had compiled concise lists of her numerous drug combinations complete with the seizures and side-effects that resulted from each.  Her dad had made spread sheets. I had made charts. We knew we had to be able to have all her information at hand to quickly produce what was needed.  It had taken us months to prepare for this trip.

I have never been so impressed with a place in my life. It was a medical mecca!  If we were EVER going to get help, it would be here. Hopes were high. We had enjoyed the drive across several states. We had even stopped at a zoo and botanical garden on the way. We were in high spirits.

After the complicated, but efficient, check in process; we were interviewed by numerous neurology specialist BEFORE seeing the FAMOUS doctor that we had an appointment with. Rose was examined over an over… finger  to nose…walk a straight line…watch by finger…push down my arms… So many questions. The exertion and excitement made us stumble at times, but we felt they had a full picture of Rose’s history when we were done.

After all the preliminary exchanges of information, we checked into one of the hospitals. The room was large with a lot of light. We were relieved that is would be comfortable for our stay. It is hard not to  feel trapped in an EMU. You aren’t there for rest. You are there for results. That means that the more seizures that occur, the more data you will acquire as to their origin.

Rose’s dad and I had learned from experience at other EMU’s to tag-team these events. We took turns staying with Rose. It is a very stressful time. The patient is weaned off his/her medications as quickly as is safely possible to encourage seizure activity. Electrodes are glued to the scalp at precise locations to pick up the electrical activities of the different areas of the brain.

During a stay in EMU, the patient has a long ponytail of wires running to a receiver box which is worn in a harness. This is cumbersome. The patient cannot shower or wash their hair until the testing is over. The head is wrapped in gauze to protect the wires and hold them in position. If one electrode comes loose, it shows up on a monitor and a technician has to come and re-glue it in place.

Rose handled the inconvenience of a colorful, wire ponytail and harness like a champ. This wasn’t her first rodeo. She enjoyed her”spa treatment” with wires. She has always been a compliant patient, even when she was tiny. She did not mind missing showers either. Win, win.

We did hit a snag in compliance of safety rules when it came to a contraption we called “Peter Pan.” This was a safety harness on a track along the ceiling.  It had cables that came down from a dolly which rolled along a track that ran from the side of the bed, across the room and into a private bathroom. The harness reminded me of something one might wear on a Zip-line.

Because patients in the EMU are being weaned off their medications, they are a fall risk. It was expected that the harness be worn anytime the patient got out of bed. Rose was out of bed frequently. For the first several days we made it a game of being Peter Pan to go to the bathroom. She was helped into her harness/costume and she  semi-glided/flew into the bathroom. The harness then had to be removed to actually use the bathroom. Then the harness had to be put back on again to go/fly back across the room to get back in the bed. Now the flying part was enjoyable. She would pose as Peter Pan as I gave her a gentle nudge and sang the Peter Pan song.

By day two, all thrill was gone. Her dad and I were tired of buckling and unbuckling the harness. She was tired of getting it on and off. I was really tired of singing the perky Peter Pan song. We no longer loved Peter Pan. This was unfortunate because with each passing day, her risk of seizures had increased. We were now at high risk and hated the harness. I wished we had delayed playing Peter Pan until a few days in. The harness became an issue.

At other EMU’s there were places a child could go, with equipment in tow, to get out of the room and have a change of scenery. We could use trips to the “game room” as a bribe. Here, Rose had to stay in the same room, all day every day. She had read her magazines, watched her movies and played all the games we had packed. We still had days to go.  The harness just added frustration.

Finally,  we spoke with the nurse in charge and assured her that one of us would be with Rose at all times and keep a hold on her every second that she was out of the bed. This was nothing new. Holding on to Rose. It was actually a habit we had. Staying close to her, holding on to her. Fear of falling was nothing new.  Only the harness was new. As I said this wasn’t our “first rodeo” ,  but we were sure hoping it was our last.

SEIZURE MAMA

 

 

Blood on the Rocks

Background: I was teaching eighth grade science. I was fragile. I was constantly in pain due to an arthritic knee. My blood-work had many abnormalities. I never felt well. I had trouble sleeping. I cried a lot. I called the bouts of tears “emotional sneezes.”

I met with my doctor to discuss disability. We figured the root cause of my health issues was all the pain from my knee. I had a knee replacement in January. 

Rose had a seizure at school while I was home recuperating from surgery. She tore up her face on the asphalt while planting Knock-out roses during her horticulture class.

I worked very hard for six weeks to get fit to return to the classroom. I went back to teaching just as Rose went home-bound due to an increase in seizure activity.

This is the story of the turning point for ME. When I decided that I was not going to do anything else but try to get the right treatment for Rose.

As you read this, remember that we are fine now. This is part of our past.

I was sitting on the couch watching television. Rose got up from the chair to change the channel. There was a crash. She fell toward the right of the TV cabinet. Her head hit the heat shield behind the woodstove which is just inches behind the sharp corner. There was blood all over the rock hearth.

I always rush to her to help,but I couldn’t move. Her dad appeared. I was frozen on the couch. I was no longer in charge of myself.

All I could do was scream. It came from somewhere deep inside of me. It was not human, it was primal, from the past, from somewhere far away. It was like something shattered and an explosion of sound came through a hole from somewhere else. I couldn’t stop screaming.

I do not know what happened next. I was blind. Everything was whooshing out from me so that nothing could enter. It was like I was emptying my body of all its emotion and energy. I was exploding and emptying. The scream was so strong, I could not stop it.

My soul was screaming.

The heat-shield was bent, but I was broken.

After this event, I decided I was done with everything else in this world. I was doing nothing else. This had to stop. She was four inches from a fatal fall. Nothing else mattered.  I quit my job as soon as we had an Epilepsy Monitoring Unit appointment. I was SEIZURE MAMA full-time. I read everything from everywhere about seizures and epilepsy drugs.

It paid off.

To be continued…

SEIZURE MAMA

In the Wrong Line

We should have suspected something.  It was the only short line at the Duomo.

I should have wondered why I had to check my small bag before entering.

Everything was crowded and strange, so we just went with the flow.

We entered the door and immediately started climbing up steep stairs in a narrow passageway.

I do not do well in confined spaces, especially in crowds. Heights make my feet itch.

We continued to climb, and climb. The walls got closer together.  My tall son actually scraped his face on the rough plaster because the walls tilted inward.

I did not want to continue, but there was no way to turn around and go down.

Finally, there was an open landing for me to pull over and let others pass. It was then we discovered that we were in the line for the dome/cupola of the Duomo.

There were four hundred and sixty three steps(scalini).

Aside from my own fears of small spaces and heights, was my fear that Rose would have a seizure.  Her triggers were excitement, exercise, exertion, exhaustion…everything.

Here we were going up, up, up.

After my panic attack, we continued upward.  Finally, there was a place to exit out of the line to enter the inner base of the dome.  NO.  I had come this far.  I was not leaving my family.  I was not leaving Rose.

The last steps were actually rungs of a ladder.  When we finally popped out to see the city of Florence, it felt like I had entered heaven.

Our journey was over. We were safe.  I could breathe.

I will remember this for the rest of my life. That awful journey to the top. The relief and joy when we finally arrived.

This could be the end of a lovely story of bravery and perseverance. But there is more.

Relax it turned out fine.

We marveled at the sights and felt the wind in our faces. We hated to start down, but we knew the journey would not be as stressful and confining.

When we finally got out and sat down to rest, Rose looked a little flushed in the face. I told her she should take one of her emergency pills. She admitted that she had left them in the apartment.

Mama had another panic attack while the boys sprinted across Florence to get the bottle of medication.

All’s well that ends well.

SEIZURE MAMA

 

 

The Fear is Still Here

Rose is away at college, but the fear is still here.

I foolishly thought that it would leave when she left.

That she would take it with her, but I was wrong.

I was unaware of this until a friend pointed it out…

that I gasped “Oh, no.” every time the phone rang during our visit.

My phone rang while I was shopping yesterday.

“Oh, no.”

This fear did not leave because she did.

It is still here.

It does not belong to her.

It is my own.

Seizure Mama

 

Ugly Doll Rescue

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

 

 

 

Walking Back Through the Fire

I may have to stop the book for a while.

Writing it is hurting me.

I am trying to make it real for my readers,

but that means re-living all the pain myself.

It takes courage to walk back through the fire.  It’s like burning again on the inside.

I will continue when I feel strong enough.

I plan small doses, even though the flow may be off.

To you OTHER SEIZURE MAMAs,

Pay attention to every side effect.

Write everything down.

Keep track of all drug changes.

Get help when you need it.

Take care of yourself.

Mama trumps doctor everyday.

Seizure Mama

No Words better than Wrong Words

Rose had seizures everywhere.  There was no secret to be kept.

The stares did not bother me, most of the time.

I knew that the observers were puzzled and concerned.

What I dreaded were the comments.

Have you tried…?  My uncle had seizures and he…  You should take her to…

These strangers did not know how long we had been struggling for a solution.

They were just trying to help, but…

When Rose was home-bound from school, we took her to a little restaurant with a train running around near the ceiling.

We knew she would like to watch it.

She sat wrapped in a towel to keep her from getting chilled.

She had bruises on her face from a previous seizure.

We sat down in a booth (always a booth) near a big table full of policemen eating lunch.

My child, bruised and pale, wrapped in a towel, not in school.

Were we going to be questioned?  Child abuse?  Neglect?

No need to worry.  Rose had a seizure.

I lay her down in the booth with my purse under her head.

We sat and waited for her to come to.

As a lady was leaving, she walked over to us.

I was prepared for a comment or question.

Instead, she just patted my shoulder and silently walked away.

Thank you wise woman.  All I needed was a love pat.

No words.

Seizure Mama

 

Generous versus Selfless

Take a hard look at how much you are doing for your child.

Are you modeling or enabling?

Doing too much for your child is a double-edged sword.

Either way, you are the one who will bleed.

If you are doing things for him/her that he/she should be doing for themselves, you are sending two messages. Both are bad.

First, you are telling your child, by your actions, that you do not believe that he/she is capable of doing this for themselves.

Do you really want to send this message? Do not hand them a handicap.

Second, you are showing the child that he/she is entitled to preferential treatment.  Maybe you are okay with this, but the rest of the world will not be catering to your needy, greedy baby.

Do not create a monster.

I am a former public school teacher. I have known many a little monster.

If you are doing too much. STOP.

It’s harder to stop a truck once it gets started rolling down the hill.

You will be run over.

Do not do this to you, your family and most of all, your child.

When you keep giving in, nobody wins.

Seizure Mama

 

How to Handle the Holiday Stress

(Reposted from 2017)

Take breaks in a quiet place.

Go outside in the cool.  Do NOT stay in a hot kitchen.

Help your child avoid unfamiliar foods, especially if they are RED.

If you have trouble getting your baby to take breaks during the excitement,

go lie down with him/her in a quiet room.

Better yet, ask a favorite cousin to do that. This may be the start of a yearly bonding time.

Pack security items such as blanket and buddy toy.  Favorite books for a break in a corner.

DO NOT forget a dose of medicine in all the chaos.

Everyone drink plenty of water.

Stay safe in the fray.

Keep the main thing the main thing….That’s time with family, not the food.

SEIZURE MAMA/Flower

 

In 2021, I want to add that this is the first Thanksgiving without Rose. Do not be sad. She has chosen to spend it with friends. She has exciting plans for the summer. I am proud of her and pleased for her. This is what we have dreamed of, Rose’s independence.

HAPPY Thanksgiving!

Put on Your Own Oxygen-mask First

When you get on an airplane.

The attendants tell you during the safety training

that if you are travelling with a child,

to put on your own oxygen-mask first.

It seems counter intuitive for any mother to take care of herself first.

But what good are you to your child, if you are unconscious?

Once you get on the sacrifice cycle with an ill child,

it’s hard to even consider your own needs

while struggling to take care of all of your child’s urgent demands.

While looking through old photos of myself, I saw a very unwell person.

The stress changed my face, my body, my personality and my spirit.

Over and over, I went without “oxygen.”

There was no time for me, no energy for me.

I would take care of myself when she was well.

Going without oxygen for twenty-four years took it’s toll.

I am still trying to get healthy.

It’s taken surgeries, drugs, therapy, a trainer, hobbies, books, religion, family and friends to bring me back this far.

It has been a long, hard fight to get back to me.

I know you are busy mama, but

PUT ON YOUR OWN OXYGEN-MASK once in a while.

Seizure Mama