Rose Knows: Then and Now

(Chapter 15 of Seizure Mama and Rose reexamined)

No one welcomed epilepsy back into the family. We did not want it. We did not want the doctor’s appointments, we did not want the drugs, we did not want the side effects, the struggles, the limitations and most of all, the fear.

Epilepsy was back to claim pieces of our lives. It was back to take Rose’s independence. It was back to whittle away at all her hard-earned progress. She had been free. She had been thriving and growing.

What tricks would it play this time? What events would it ruin? Where would it throw her down to the ground? What would the new drugs do to her? These were the thoughts that swirled around in my mind. I wanted to reject this reality. We all wanted to deny epilepsy’s return. It would not let us. It refused to be ignored.

REJECTING REALITY?

We all have things that we want to reject. I did not know how much of this I did until recently. It seems I do battle with reality quite a bit. One of Rose’s many doctors referred to this as “shoveling sand against the tide.”

I have been shoveling sand throughout adulthood. I have fought the many things I did not want to accept. I have depleted myself trying to change the inevitable. What good has this done? None. It has been harmful.

This is where you come in Another Mother. You will be the best mother you can be to your fragile child. You will search for the best doctors and the best treatments. You will support your child to be his/her best. Then put your shovel down and rest.

This is not giving up. This is not defeat. This is acceptance. With acceptance comes peace.

I am going to have to accept quite a bit that I cannot change, epilepsy included. This is not the reality that I would have chosen for myself, but it is what it is. Life happened while I was planning other things. Wishing and shoveling will not change whatever is coming.

I am just going to let things happen.

I am putting my shovel down.

FLOW

Reposted Chapter 9: Second Drug Down

Rose had many sore throats and ear infections from the time she was a baby. To help with these issues, she had a tonsillectomy and a tube placed in her left eardrum for drainage in December. She was five years old and in her second year of prekindergarten preschool. The surgery went as planned. We went home feeling like we were eliminating several health issues. We were relieved to have these two surgeries behind us.
Around 4:00 AM the night after the outpatient surgery Rose started vomiting. We hoped this was due to the post-surgery pain medications. Her vomit consisted of applesauce and white flecks. We wondered if the white flecks were pieces of drug 2D. The vomiting continued. We tried to intervene with a gel applied to her arm. The anti-nausea gel was our safety net for nausea. We kept syringes of it in the refrigerator.
The first seizure occurred about 10:00 AM. The first one was short. The one that followed was a bit longer. Then there were two episodes of stiffening of her arms. Any series of seizures is scary, but Rose’s body was under the stress of post-surgery and the after-effects of anesthesia. We knew we needed help.
We went to the Emergency Room at our local hospital. We made it clear that Rose’s neurologist must be contacted before any drugs were given in her IV. A large dose of drug 2D was administered without consulting Dr. T. When a blood sample was drawn later, the levels of drug 2D was really high, too high. No other drugs could be given.
Rose had four more seizures while at this high level of 2D. She was seizing while unconscious. Her emergency, sub-lingual pills could not be used due to her high levels of 2D. We watched helplessly, realizing drug 2D was not effective in preventing Rose’s seizures.
Rose was moved to a room on the pediatrics floor. I was comforted that her bed was surrounded by caring and attentive professionals. I was not comforted that they could barely hide their panic. I watched as they lovingly tried to help my unconscious little girl as if she were their own.
They were hovering around Rose’s bed, totally focused on her every move when a nursing assistant rolled some scales in to the room to attempt to get Rose’s weight. The group heard the squeaky wheels of the scales enter her room. They all turned from the bed to see the scales. In unison they belted out, “Not now.” It was such a ridiculous event that I laughed out loud.

Seizure Mama speaks to parents.

When you take your child to a hospital, you are no longer in charge. They have their rules and protocols that they must follow. You must be assertive, yet patient. I am not good at either of these things, but I have had to practice. You and your child will have to live with treatments received in the Emergency Room long after the doctors and nurses have moved on to the next emergency. Keep all your medication information and doctor contacts with you at all times. These medical professionals need all the information they can get, fast, so they can make the right decisions quickly.

Then and Now will HOPEFULLY appear on Wednesday July, 14, 2021

We are struggling here. We are doing our best. That’s all anyone can do…including you Other Mother. My dad’s memorial service is Saturday. It has been a year since he left us. I still cannot use the d-word. I am still in a sling. My garden is full of weeds. My son moved into his first house. Not all struggles are bad.

Please know my heart is with you even when I take breaks from our blog.

Flower/Seizure Mama

Reposted Chapter 5: Seized on an Island

Our family had the tradition of staying on the same two beautiful islands during vacation each summer. These two destinations were adjoined by a bridge. We either rented a house on one island or a first-floor condo on the other. Both locations were on the beach. My parents could watch the ocean from the porches.
This particular year we stayed in the usual condo. There was an adjacent lawn with plenty of play-space off the patio and a nearby pool. It was the perfect location to easily keep track of two young children.
We were in the middle of a family ballgame on the lawn when Rose suddenly stopped playing and walked determinedly toward the condo.She stepped inside and immediately laid down on the couch in the living room. The couch was under an air conditioning vent. Her chin began to quiver and twitch as her face darkened. Her torso was hot, but her limbs were chilled. This seizure was about ten minutes long. We wondered what conditions may have brought this on. Was it not taking a nap? Getting too hot then too cold? Maybe the dosage of drug 2D was too low? This was the constant guessing game we played after each seizure. Why now? What caused it? What should we do differently?
When we returned home a blood level of drug 2D was taken. Rose’s dosage was increased.

Seizure Mama speaks to parents:

What caused this seizure? Epilepsy is the obvious answer. We seemed to ignore the elephant in the room over and over. It amazes me how we kept questioning the cause of each seizure like it had a new source. Yes, there were triggers that promoted the onset. We suspected that rapid temperature changes were a trigger many times.
You cannot keep your child in a bubble. Get out of the house. We spent a lot of time on the floor in public places. Me sitting beside my unconscious daughter and wishing we both could become invisible. Wishing we were someplace where scared and puzzled folks couldn’t stare at us.
So how would we prevent this? Stay home waiting for the next seizure. Avoiding any stimuli that might be a trigger. Is this an appropriate life for a little girl? Her parents? Her brother? Hiding and waiting?
The seizures will come whether you are hiding at home or enjoying an outing. Pack a bag of seizure supplies. Put your child in a cute helmet if necessary. Go out and have a life between these damn things.

THEN and NOW will be posted on Wednesday June 2, 2021

Hiding the Elephant

I have been known to bring home pets without permission.

Either the creature needed me or I needed it, so it came home with me.

Now, when I see an animal and say “It needs me.” or ‘I need it.”, someone in the family chants “NO MORE PETS” like a mantra.

Once, I had a long vivid dream in which I brought home a baby elephant and had to keep moving it around to hide it.

That is how I feel now, like I am hiding an elephant.

Its name is Fear.

Rose goes back to the university tomorrow. She is packing. I am sewing.

There is tenseness in the air. She knows I am anxious.

She has bags of mask to give away for her “Circle of Safety.”

Rose knows that I am a COVID nutcase.

I need her to be my ‘wingman’ on outings. I am fiercely afraid.

I fear the virus will find us. I fear it will take someone I need and love.

I have lost enough this year.

So there is Fear looming large, like an elephant.

I am trying to hide it.

I just need to keep it in check another day and a half.

Mama Bear is hiding her elephant from Baby Bear,

because Rose has her own elephants that she hides from me.

It’s a game we play, Hide and Don’t Seek.

I don’t need my elephant and neither does Rose.

Mama Bear

Fear by Phone

I have enough fear.

Thanks for calling.

I will not be scared into voting for you or not voting at all.

I will not answer your calls.

I do not listen to your vicious, fictious warnings.

I know who you are.

I know you will stop at nothing to win.

Fear may work on others.

I have had enough fear to last a lifetime.

You won’t get my vote,

but I do have some hate with your name on it.

Don’t call me anymore.

I have all ready voted.

Not for you.

F*** your fear.

Flow

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.

Stop this Snake

I have a sneaky seizure snake

coiled in the back of my mind.

It stays put most of the time.

Sometimes it strikes

with electrical venom

and shocks my brain.

It slithers through my thoughts

and steals them.

I wish someone strong

could put a heal on the head

of this seizure snake.