It All Began with a Hot Diaper

1 Hot Diaper

The warning came in the form of a hot diaper. I was sitting at the kitchen table with Rose on my lap. I felt extreme heat radiating across my thighs. I thought I had spilled a cup of hot coffee into my chair, but there was no coffee near me, only squirming and fussy Rose.
When I figured out that the heat was coming from her diaper, I panicked. How could her pee be that hot? All I could think of was getting her to her pediatrician. I knew the fever had to be really high for her urine too be this hot.
I grabbed Rose’s diaper bag along with my purse and headed out the door. I drove straight to the doctor’s office even though I knew it was their lunchtime. I pulled our van into the parking lot facing the door of the office. I paced back and forth outside the open van door while Rose sat quietly in her car seat. The nurse appeared to unlock the door. I removed Rose from her seat and hurried toward the nurse. I quickly explained why we were there without an appointment.
It was a relief to be ushered into the office and down the hallway toward the examination rooms. We stopped in the alcove where vitals were taken before going into a room. As the nurse put the thermometer in Rose’s ear, Rose stiffened. Her head tilted back and her eyes rolled up in her head. She was twitching and twisting so strongly that I could barely keep her in my arms. I screamed the doctor’s name. “She’s having a seizure!” I heard myself yell.
The doctor appeared beside us and cradled Rose’s head as we moved as a group into the nearest room. Rose was still jerking as we gingerly placed her on the padded examination table. Then she became eerily still and ashen. Was Rose still in there? I held my breath and waited for a movement or sound, some sign that this was over and Rose was back.
The doctor stayed with us, silently administering acetaminophen rectally. He sponged down Rose’s arms and legs with cloths wet with tepid water. Rose began to squirm. I remember taking a deep breath. She stirred some more, then looked around and sat up.
The doctor left to see other patients while I sat in the chair holding Rose. I was stunned at what had just taken place. Rose eventually got down on the floor to play with the toys on the rug as if nothing had happened. I couldn’t take my eyes off of her.
I had never seen a seizure in person before. I didn’t know anything about childhood seizures. Mama had some serious learning to do. This was not in all those parenting books, or maybe I had skipped those parts.

Seizure Mama speaks to parents:

After the shock wore off, I played the terrible parent game called “SECOND GUESSING YOURSELF.” If you have never played a form of this game, go on to the next story. The rest of you, here we go.

This form of the game is called “What if I had..?” It involves a kind of scientific twist like forming an if/then hypothesis and guessing the various outcomes. In the game you get to be the cause of every calamity. It’s a great game to play at night, in the dark, when you should be getting some much-needed rest.

I will demonstrate.

1. IF I had changed Rose’s diaper and given her a cool drink instead of rushing to the doctor’s office, THEN she might have cooled off and never had that seizure.
2. IF I had changed Rose’s diaper and clothes to a cooler outfit, THEN…
3. IF I had given Rose a dose of an NSAID(non-steroidal anti-inflammatory)drug and a cool drink, THEN…

The possibilities of these variations are endless. You can lie awake and play all night if you wish.

What is the point of this game? Blame of course. You are in charge of your world, so this seizure must be your fault! I know, that sounds crazy right? Then quit thinking that way about yourself. Bad things happen. Maybe things could have been done differently. Maybe there would have been a different outcome. But you don’t know that. So when you catch yourself playing this terrible game, pat your tired self on the back and roll over and get some sleep.

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.

 

 

 

Do Something

When you don’t know what to do,

do something.

I am in a quandary this morning.

Rose came home.

There are concerns about summer plans.

I am unsure of how to proceed with publishing.

One thing I am sure about is

I will keep busy today.

I will circle the gardens with a bucket and scissors.

If it rains I will move inside to do laundry and clean the shop.

If all else fails I will sort beads.

I know this sounds crazy.

It helps me to stay out of the worry maze.

If YOU can’t get to YOUR Happy Place, at least stay in a busy place.

Doing something helps me think.

I have a lot of thinking to do.

Seizure Mama/Flower

 

Story #35: Stop the Music

When Rose was in eighth grade band, the middle school band was invited to join the high school band to play during a football game. Rose sat with all the other trumpet players in the band section of the stadium.
Rose’s father and I sat in the adjacent section where we could keep an eye on her. We were concerned because Rose hated loud noise. We had instructed her to take out her tiny hearing aid while the band played. This hearing aid was red and the size of a kidney bean. It cost thousands of dollars and was not covered by insurance.
At some point during the first half, we noticed a disturbance where Rose was sitting. She was having a seizure. I rushed down to her side. The band director gave the other band members the okay to go take a break. This made it easier for the EMTs to get to us. Rose stayed unconscious for quite some time after the seizure. Her dad went to get the van and drive it up to the back of the stands.
It was about then that I noticed that Rose’s hearing aid was not in her ear. I searched around her. There was no little red bean. I went through her pockets. No bean. The EMTs joined in the search. We made quite a spectacle. Unconscious Rose, her mama, and a bunch of men in uniform scouring the empty stands.
The band members returned from their break. The band leader asked if I minded if they played some music. The music resumed. Rose aroused. A group of men helped haul Rose up the stadium steps to the van. As I followed them up the steps, a woman tapped me on the shoulder and asked “What were ya’ll lookin’ for down there?” She was curious about the lost item, not the unconscious girl. I guess asking about Rose would have been rude.
When we got Rose safely into the backseat of the van, I informed her dad that her tiny hearing aid was missing. I searched her pockets once more. Tucked down in the corner of her jacket pocket was that tiny expensive bean. I was so relieved and happy.
As we drove away from the school, Rose’s dad turned to me and asked, “Other than that, Mrs. Lincoln, how was the play?”

Seizure Mama speaks to parents:

It may be futile to try to keep your child’s seizures a secret. Rose’s condition was known to everyone at church, at school, and out in the community. We never tried to hide her epilepsy. There was no point in it. It went with us wherever we went, whether we liked it or not.

Travelling Safely

Folks with epilepsy have a whole extra set of preparation for trips.

Rose packs seizure supplies in addition to everything else.

To prep for her trip with peers,

we purchased some downloads from The Epilepsy Foundation of America.

These were 8.5 by 11 inches.

I reduced them on my printer and printed them on card stock.

Then laminated them, punched holes and attached ribbons or clips.

Rose gave some to the people she will be travelling with.

She will also attach copies to her belongings.

That way there will always be instructions on what to do on hand

IF she has a seizure.

Proactive is so much better than reactive.

I will share this with the EFA.

Maybe they will produce something like this for travelers.

Stay safe,

Seizure Mama