Be Brave: Then and Now

Epilepsy requires bravery from everyone involved.

Mama had to fight through a whole lot of fear to get to the brave side of the continuum. The fear is always there. The bravery has to be sought for and fought for. This was the hard part for me, but not for Rose.

Bravery is in her blood. Sometimes she reminds me of Lieutenant Dan in the movie Forrest Gump. She is perched atop the mast of her boat yelling at the storms and shaking her fist. That is her super power.

Where did this come from? Experience. Rose knows her storms are inevitable, so instead of going below to cower, she climbs her mast and dares it to destroy her. No where is safe. Might as well give epilepsy the finger.

Her bravery has been a surprise since she was small. Doctors expected to drug her for certain procedures. “No need.” I told them. She sat quietly watching or lay in the tunnels with her eyes on me as machines examined her insides. Her bravery was a blessing. It forced me be brave or at least pretend to be brave.

Reposting of Chapter 7: The First Neurologist will be on Saturday, June 12.

Reposted Chapter 1: 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.

Hot Diaper: THEN and NOW will be posted on Wednesday, May 5

Dear Parents: Then and Now

I wrote the letter to parents last. I wanted any parent who picked up this book to immediately sense empathy. I wanted them to know that we as parents recorded our experiences honestly and even ignorantly. We did not have all the answers. Nobody did.

I wanted to send a message of hope to anyone desperate and scared enough to read a book with the words seizure and epilepsy on the front cover. I hoped our stories to be like a remote friend that had been where the reader was, having conversations about our common experiences.

This is not pleasure reading, it is desperate, panicked reading. I remember when I started looking for anything that might help us. We were grasping for any straws that might lead to a better treatment. No drugs had worked. We had many side effects, but no progress.

I also wanted to let the parents know that a cure may not be in the cards. This was a giant pill for us to swallow. We kept searching for a magic drug only to discover there were bad drugs and worse drugs and possibly no drug that would control Rose’s seizures. Our search for an effective combination took twenty years.

We were fortunate to find the right treatment only because we never stopped searching and we had a neurologist who refused to give up on Rose. If you have not found the right neurologist, keep searching. Giving up gets you nowhere.

This may take over your life for a while. Save a tiny part separate. For me, it was my garden. It was always waiting for me to shed my role as Seizure Mama and return to being the Flower. My garden has saved my soul and sanity over and over again when everything else fell apart.

Get yourself a little life raft to hold on to and keep you busy during the storms. A purposeful hobby that your troubled mind can escape to., to take your thoughts somewhere else besides epilepsy. I have sewn hundred of masks through the pandemic to curb my fears. I could not stop the virus, but I could help protect people I knew from getting it.

I want to highlight that your role as a parent is a supporting role. You do props and costumes and stay behind the curtain. You do not have epilepsy, your child does. Make them face it. Make them handle it. Make them own it.

They will need every scrap of strength and perseverance to get through this life with epilepsy. They must practice being tenacious and tough. They must develop their superpower of going it alone and fighting their own battles.

Getting back up is the tough part, but that is when the magic happens.

Seizure Mama

Story #8: Preschool for Two

After the series of seizures in the hospital, drug 2D was weaned down and replaced with drug 3S. This new drug was sprinkled onto pudding or peanut butter. The new set of side effects to watch for were hair loss, increased appetite, and learning issues. Well, at least her gums were safe now!
Rose’s birthday is in October so she was either going to be older than her classmates or much younger. Since she was small and had health issues, we had chosen to keep her in preschool an extra year before starting public school. We were glad that we had done this in view of all these ear infections, drug transitions, and seizures. I wore a beeper on my belt at this point. I would drop her off at preschool and go walk at a park down the road or visit grocery store located just across the highway. I was never more than two minutes away. Rose and I were tethered together out of my fear. These Mother’s Morning Out days of preschool were our only break from each other.
Our family loved this preschool. We knew all the teachers well since Rose’s older brother had attended there a few years earlier. The one person on the staff who was not my friend at the time was the director. She was gruff and blunt. She said what she thought without any sweet Southern filter.
When Ms. B heard about Rose’s surgery and the following series of seizures, she phoned us. She informed us that the church preschool could not be responsible for handling medical emergencies. The teachers were not trained for these. Rose was a liability risk. This was hurtful to us, but I also understood it. Rose’s teachers truly loved her and if anything happened to her on their watch, they would have been devastated. By law, public schools have to accommodate students with special needs, but churches do not.
Our options were to pull Rose out of her preschool or have me stay in the building every day while she was there. We were not going to tell Rose at the tender age of five that she was not welcome back into her beloved preschool because of her seizures. Instead I simply stayed at the church every day. The staff knew that I was upstairs in an empty room near the director’s office. I was only a shout away if needed. I read books and studied. Other mothers and teachers dropped by for visits. The director came by to check on me. I began helping her out with needed tasks. Then I cataloged all the children’s books and repaired them. I even substituted when other teachers were sick.
The experience was good for all involved. Rose got to stay in school and her teachers did not need to worry because I was close by. The director and I became good friends.
When Ms. B would drop by to check on me everyday, sometimes I shared my worries. Once when I was obsessing about an upcoming event, she said, “Don’t cross the Fox until you cross the Fox.” She then went on to share that this was some advice from Abraham Lincoln. Apparently there was a Fox River. As folks traveled toward the river they worried about whether the river was up too high or moving too fast to get across. Lincoln was reminding folks to wait and “cross that bridge when you get there.”
Once Ms. B caught me crying. I was overwhelmed by all the hoops we were having to jump through to get help for Rose. She looked into my eyes and asked, “How do you eat an elephant?”and then answered, “One mouthful at a time.”
Seizure Mama speaks to parents:

Forcing the responsibility for your child’s safety onto others is not fair to them or to your child. If your child’s seizures can be dangerous or even life-threatening, you want a willing and competent person in charge of his/her care. You must be an advocate and an assistant. People fear what they do not understand. You must educate the people around your child about epilepsy. Yes, there is a stigma. There will be some shunning. But if you confidently share information with others, there will be no surprise,or public revelation to dread. We were always open about Rose’s epilepsy. This is so much better that trying to guard it like a secret. Be brave and honest. Would you hide your child’s asthma or diabetes? Of course not. Then do not hide this condition. There should be no shame. If your child senses your shame, he/she will feel ashamed of it,too. Do not hand them a handicap.

Can I Stop Now?

Can I stop being afraid?

Can I stop trying to fix the unfixable?

Can I forgive myself for not knowing how to make this better?

Can I quit wondering if I brought on this curse?

Can I give up and quit trying to breathe?

This stupid struggle is too hard and too long.

PLEASE!!!!!! Can I stop now?