Reposted Chapter 11: Mama in Kindergarten

Rose and I started kindergarten together. The first two weeks were half days, so the teachers could make home visits in the afternoons. Our plan was for me to stay with Rose at school until her teachers came to our house for the home visit. They knew this plan and could have scheduled our home visit earlier. Rose and I were both known at the elementary school because Rose’s older brother was there. I had been involved in the Parent Teacher Association and volunteered often.
I will always remember those two weeks of constant action. Rose’s teacher and assistant were both amazingly patient and pleasant women. There was constant activity every minute of the day, even during nap time. I found it exhausting, but very entertaining. I felt really good about Rose being with these two women. I knew, despite their many responsibilities, they would take care of Rose as best they could.
The day of the home visit arrived. Rose served her teachers brownies and lemonade. We talked briefly about funny events that had occurred during the first weeks of kindergarten. Rose was happy to have her new teachers in her home.
They both sat on the couch as I demonstrated how to handle a seizure using Rose’s large stuffed cow, Lovey. I described how a seizure might start and then placed Lovey on her side. I opened Rose’s big red seizure bag that was to stay in the principal’s office. I put a rolled towel from inside it under Lovey’s head and pulled out Rose’s emergency medication and pretended to administer it to the cow.
After I finished the demonstration, I looked into the teachers’ faces and waited. Would they handle this for us? Could they do this? Were they willing to take this on? Most importantly, was I going to have to spend the year in kindergarten?
They looked at each other. Then looked back at us. Ms.J said, “We can handle this.” I couldn’t believe what I heard. Just because public school is obligated to make accommodations does not mean they gladly do it. Ms.S said they both knew how to handle seizures. One had a husband who had epilepsy, the other had seizures herself and was taking the same medication as Rose was. The principal knew all this. That’s why he put Rose in their classroom. I felt so blessed to have these two women be part of Rose’s team. What a relief and a gift. I will always be grateful to these two wonderful women.

Seizure Mama speaks to parents:

A “seizure bag” went wherever Rose went. In it were several towels, a change of clothes, wipes, paper towels, and a bottle of water. Her emergency medications came in packs of two syringes and were somewhat expensive. One was kept in the big red bag at school, the other one in my purse. These emergency drug syringes could not be left in the car. The drug could not get too hot or too cold, so the syringe stayed with me. This meant that I carried an over-sized purse for years. I rolled the sealed syringe in a bandanna scarf to protect it inside my cluttered purse and used the bandanna to cover Rose during a seizure. This is how you live with epilepsy on the go.

THEN and NOW will show up sometime soon.

Then and Now: Second Drug Down

Sometimes wisdom comes in unwanted ways. The learning curve gets painfully steep during medical crises. There is trauma mixed with desperate love for a heart-breaking combination.

I am adding some things here that I have learned while my father was in the hospital with cancer. These were hard lessons. These situations may arise with your family as you navigate serious medical decisions. Let’s hope you never get to this point.

The first difficult situation is when all decision makers do not agree on the next course of action. Different personalities handle emergencies differently. This can cause friction within your frazzled family. A hospital social worker may need to get involved to get a clear idea of what the patient wants and what the doctors advise. Sometimes it is only a matter of miscommunication. Sometimes one person’s expectations are unrealistic. Other times fear blurs logic and makes a loved one afraid to have any treatment tried despite the necessity.

The second difficult situation involves Covid-19 protocol. Some hospitals allow only one family member to be with the patient. Who will that person be in your family? We tag-teamed and texted constantly to keep everyone in the loop. It was still lonely and stressful. Other hospitals do not allow any visitors under some conditions. This is horrible for everyone, especially the patient even though it may be necessary. This pandemic has effected the lives of everyone, even those who have not had Covid and are fully vaccinated. Hopefully this will end in the coming year or two.

My family left a notebook in the hospital room so that everyone could record what happened on their watch and left notes of love and encouragement in it for the other members of the team. Near the end of daddy’s life, we wrote down his every word and movement so that the information would be there to share with the entire family.

Maybe some “If- Then” discussions and role playing ahead of time will help prepare your family before you are trapped with these hospital protocol dilemmas. It is always better to be proactive than reactive.

Lastly, I would like to add that PTSD may be in your future. When it finally makes itself known, get some support and/or medication. The whole family is affected by the serious illness of a loved one. Self-care of the care-giver is very important. That’s YOU Other Mother. Your family needs you healthy and whole to play your role.

Seasoned Mama

The First Neurologist: Then and Now

I love the fresh hope that comes with a new specialist. It feels like a pro has been added to a team of amateurs. Expectations are raised to new heights.

We really did gain confidence in Rose’s treatment temporarily. Dr. T had expertise and experience. We felt we were in good hands. We were for a while.

Dr. T was very focused and proactive at first. Then her partner left. She had all the patients of the practice. I do not blame her for being scattered. She seemed distracted and even testy when we questioned what she was saying. My notes from our appointments confirmed the randomness of her recommendations.This ship was sinking.

It is really scary to switch specialist. A second opinion must be requested. A letter and records must be sent to an unknown doctor. It is like starting over.

It takes bravery, or at least desperation, to move to a new neurologist. There is that word again!

BRAVE

The uncertainty that comes with seizures requires constant bravery from everyone. Fear has to be met head-on. Hide it, swallow it, curse it, whatever it takes. Just do not let fear keep you with an ineffective doctor or ineffective drug. Listen to your gut. Your child’s future depends on your making good decisions. Based on facts NOT fears.

Next up: Chapter 8: Gilligan at the Lab on Saturday, June 19, 2021

Reposted Chapter 7: The First Neurologist

Rose’s first visit to a neurologist was months after her first officially epileptic seizure. During the previous months she had tried one drug that failed and was on a second that was prescribed by her pediatrician. Many tests had been run including an electroencephalogram(EEG). She had experienced a second big seizure. We were anxious to learn everything we could from this appointment.
Dr. T’s diagnosis was complex partial epilepsy. This meant that Rose’s seizures started in a certain place in her brain and then generalized to a full seizure know as grand mal or tonic clonic. This made sense to us because her febrile seizures started with chin twitching. Rose referred to these as a “tornado in her mouth.” She could not speak during these episodes, but she could point to her mouth. That little aura served as a warning that was so helpful in those early days. The “tornado” aura soon disappeared, so that we were all surprised by Rose falling to the floor.
Since her seizures were lengthy, Dr.T advised us to get CPR training. She recommended that we call 911 for any seizure lasting more than five minutes. We knew that longer seizures meant danger to her brain and her life. Her dad, brother and I vigilantly watched her, but since Rose was a very active little girl, this was not easy. Our family started tag-teaming “Rose watch” duty. She always stayed within earshot of the person responsible for her.We made sure someone was always nearby and alert.
The neurologist evaluated Rose physically and mentally with simple tests. She was extremely bright and was evaluated as entry-level first grade, although she was just entering her last year of preschool. Dr.T instructed us to watch for developmental backsliding and side effects involving Rose’s gums. After our experience with her first drug 1T we knew that such changes were plausible. We hoped that this second drug would do its job without the side effects.
The plan was to stay on drug 2D for three years and then slowly wean down and off if no more seizures occurred. We were glad to hear that these childhood seizures might eventually diminish. Our new goal was three seizure-free years.
We jumped through all the seizure-prevention hoops. Rose took all medications on time. She was encouraged to take afternoon naps even if it was just quiet time in her bed. We diligently watched for fevers and treated each immediately with a red or pink over-the-counter non-steroidal anti-inflammatory drug(NSAID).

Seizure Mama speaks to parents:

The term SUDEP(Sudden Unexplained Death from Epilepsy) was not coined at this point. We knew that during Rose’s first long seizure her heart may have stopped. We knew that the longer and stronger the seizures were, the more dangerous and life-threatening they were. This was always in the back of our minds. It is still in the back of our minds. Rose is twenty-six years old and away at college, but that fear still remains here. You must go on with your life despite this threat. Uncertainty is present in every life; you just got yourself a big ol’ dose of it to hide somewhere.

THEN and NOW will be posted on Wednesday, June 16, 2021.

Mama has a lot to say about this. Whew!

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.

The Art Stayed

Rose was home bound several times during her twelve years of public school.  It was during these periods that we saw her academic struggles up close.

She would go from knowing her multiplication tables to not remembering them, but the art stayed.

Rose could spell words one week and forget them the next, but the art stayed.

She would read a story and forget the names of the main characters, but the art stayed.

When everything else seemed to be flushed from her brain by seizures and side effects, she could still mix a perfect flamingo pink paint and create beauty with her shaky hands.

There were times when we gave up on academics and just did art.

When nothing would go in, the art still came out.

Her teachers were understanding through these roller coaster rides.

When she was stuck in the Epilepsy Monitoring Unit for days at a time, Rose made hotmats. She asked the healthcare workers which colors they wanted and custom made them for people. It was a great way to keep her busy. The nurses and staff thought it was super cute.

When the academic struggles get to be too much for your child,

draw their spelling words, make a math collage, make up a story…

Sometimes it is better to pause than to pass.

Seizure Mama speaks to parents:

I am a former teacher. I knew how important it was for Rose to not fall behind in school.  I also knew how unimportant it was for Rose to fall behind in school.

While she was home bound in grades 3 and 4, her teachers and I refused to frustrate her by pushing the curriculum. One of her teachers said it was like trying to teach a blind person colors.

We worked to keep her moving forward in any way that worked. Art always worked. It was also a way to reassure all of us that Rose was still in there, through all the seizures and side effects.

They could have been terrible times, but we did not let them be terrible. Sometimes you have to let go of the agenda and go with the flow.

Seizure Mama/Flower Roberts

Epilepsy Blog Relay Post: June 23, 2019

 

 

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.

Be Brave?

Rose had seizures everywhere.

On these many occasions, I plaster a smile on my face and look folks in the eye as they glance and walk by.

Nothing unusual about a grown woman sitting on the floor/ground beside an unconscious little girl.

Rose had a particularly dramatic series in an undisclosed, public location.

As I was sitting on the floor in a hallway, a woman with healthy children walked by, patted me on the shoulder and said “Be brave” and walked away.

I am on the floor. My child is unconscious, again.

Be brave?

Do you tell a person with cancer to be brave?

Do you pat the shoulder of someone being wheeled in to open-heart surgery and whisper “Be brave”?

What choice do we have?

Seizure.  Stop the clock.  Then we wait.

Seizures stopped ballgames, picnics, award ceremonies, bible school, band practice, ball practice, dinners in restaurants.

Stop. Wait. Hurt? Get up.

Stop. Wait. Hurt? Get up.

I am tired of being brave.

How about sitting on the floor with me?

Wait with me.  Down here on the floor.

Anchored to this spot until it’s over.

Until she comes back to me.

Stay and help us up.

If you really care, don’t walk away,

leaving us to be brave,

down here,

alone,

afraid.

SEIZUREMAMA