Reposted Chapter 2: Fevers and Seizures

Rose had many ear infections that were usually accompanied by fevers. Unfortunately, these fevers sometimes caused more febrile(with fever)seizures. We were vigilant about taking her temperature anytime she was sick. If her temperature was elevated, we gave her a children’s liquid form of an NSAID(non-steroidal anti-inflammatory drugs). We tried diligently to prevent her fevers from getting high enough to possibly cause a seizure. We attributed her problem to a faulty thermostat. No fevers, would mean no seizures… we thought.
Over the next three years after her initial seizure in the pediatrician’s office, Rose had twelve more febrile seizures. These were always scary. It seemed as though we just couldn’t prevent them even though we tried to intervene with over-the-counter medications. We began to suspect that there was another cause of these events than just fevers.
I began wondering if these seizures originated from a source that was always present, not just something related to or caused by fever and illness. Was there something in her brain causing these? Maybe a lesion,or tumor, or chemical imbalance? When would this end? All children get sick, but most don’t have seizures accompanying illnesses.
I began to feel that the cause was lurking somewhere in Rose, waiting until she was weakened. I suspected that this was no visitor that showed up with illnesses and fevers; this was a resident. I constantly watched for flushed skin and chin twitches.
I did some research. I read all about febrile seizures. No one mentioned the word epilepsy. It crossed my mind, but not my lips. Not my child. It was these ear infections. If we could get them under control, things would be fine. An Ear,Nose and Throat- specialist, that’s what we needed. Get some tubes in those ears so they could drain, the infections would clear, the fevers would stop. Voila!

Seizure Mama speaks to parents:

Later on there were some suspicious incidents that did not involve fevers. Rose referred to them as “tornadoes in her mouth.” I did not know anything about partial seizures. I had never researched epilepsy before. I did not want it to be epilepsy, so I ignored some signs. That’s called denial. Would my being more proactive have made any difference? No one can know. I did the best I could with what I knew at the time. When there were undeniable signs of something more, I jumped into action. When the doctor’s diagnosis was febrile seizures, nothing countered that. I am not one to borrow trouble.

Fevers and Seizures: Then and Now will be posted on Wednesday, May

Follow Rose diaper to dorm room.

Hot Diaper: Then and Now

I have replayed this memory many times, because it was the beginning. Would my handling it differently have lead us down a different path?

In my mind, I have watched my young-mother-self over and over. Young me panicking and running out of the house with hot little Rose, knowing only that I needed help. A mother and baby alone at home among the woods, down a long driveway, inside a locked gate.

What I see now is insecurity as a mother, fear as a care-giver and and a lack of confidence in handling a new problem. This is the surprise for me. I was a confident biology student and science teacher. Why was motherhood a game-changer?

My answer is that I am a person who has to be over-prepared to feel confident. I had years of training in biology and then additional years as a teacher. I felt prepared, so I was at ease in those roles. I did read books on parenting and talk to other mothers, but I never relaxed when it came to the childcare issues. I always second guessed my decisions, thus the “Blame Game.” Maybe I will be a confident grandmother after all this experience. Ha!

Now that I have had decades to reflect on my mothering skills or lack of skills, I have come to the conclusion that I did my best with the best intentions. No mom could love her children more than I love my two. Even though I could have handled this first seizure in many different ways, I always come back to the same conclusion…

that I am glad this event occurred in the pediatrician’s office where I had a nurse’s and doctor’s assistance for this first of many traumatic seizures.

So… Hi, Ho! Let it go!

Seizure Mama

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

My Plan for the Year

I hope to post a story from our book, Seizure Mama and Rose, on Saturdays and then write a follow-up post mid-week for the next 52 weeks.

This is my “purge project.”

A year from now Rose will graduate and we both will move on with our lives.

I want to know that our struggles and victories are out there for others to find.

This journey has been long. It has made us both strong and fragile.

Do not worry “Other Mothers”, you will know where to find me.

Come along for our twenty-year journey “Diaper to Dorm Room” with me giving my take on things decades later.

Welcome to our lives…

Seizure Mama

Let’s Begin Again

Seizure Mama and Rose; 1994

Join us as we journey from diaper to dorm room.

Dear Parents,
I wish I could claim that this is a “How to” manual for raising a child with epilepsy. It is not. This is the story of raising our daughter Rose. We made many mistakes. Our family did the best we could despite our own fears and ignorance. We were never trained as parents, much less as medical specialist. Our job was to raise Rose, not to cure her. We found the best doctors and tried many medications, but a treatment is not a cure. We did what parents do. We flew by the seat of our pants with our hearts wide open and breaking.
I do not recommend you follow this twisted trail of breadcrumbs that I have left here for you to read. I only hope that you recognize your own struggles among these stories and realize that you are not alone. Someone else has been where you are now, as terrified parent, and survived to tell the tale.
Just remember you do not get to be the superhero in your child’s story.
Yours is a supporting role.
Your child is the star.
When they fall down, you help them up.
Eventually, they will not need your help to get back up.
Getting back up is the important part.
Your job is to get them strong enough to rise on their own.
Then you can stand back with pride and watch them rise.
This is where we are now…
Watching Rose Rise

Stars for Navigation

This has been a year of upheaval and sadness.

Rose is trying to find her way in a world without her grandfather, Bop.

She is confused by the actions and beliefs of folks we thought we knew.

The internet has a plethora of misinformation.

This pandemic has isolated everyone.

Rose misses her international friends who were not allowed to return school.

She calls home a lot.

We cry, we laugh and we have long discussions about topics we never mentioned before.

We both are struggling to stay good and kind through our confusion and anger.

Neither of us are “sugar-coaters.” We are blatantly honest.

But we are also observant and thoughtful.

We are both learning to quietly wait and see.

Like floating in our ships while waiting for the clouds to clear

so we can navigate by the stars we know to be true.

Ignoring the flash and bang of the over-confident and ignorant.

Waiting for the dust to settle

and the phoenix to rise from the ashes of this catastrophe.

Steady Rose. Hold your course. Follow your star.

Mama