Category: seizure mama

Story #33: Bike Wreck in South Dakota

Our family took a three-week trip across the country to the Grand Tetons and Yellowstone National Park. Our son was in high school and Rose was in middle school. It was the perfect time to take such a trip. Our children were mature enough to handle the long hours on the road. I will always remember things about this trip that shaped our future. It really was a defining time for our family. There were obstacles. We handled them as a family.
We drove our truck and tent-camped most of the time. When we arrived at our first camping spot, Flagg Ranch, we got out of the truck to see the most vivid double rainbow I have ever seen. We thought we had lucked in to the perfect campsite. We had two tents, one for sleeping and the other for all our supplies. We did not enjoy a restful time here, however. First, it was hard to sleep due to a park ranger’s loud truck circling the campground all night on bear patrol. When a rain storm came during the second night, we realized that our prime site was a gully. Both tents filled up with water. We were forced to move camp in the dark during the rain. We spent most of the night in the laundry building drying our sleeping bags. Other campers doing late-night laundry let us use up the remaining time on their dryers. This was on my birthday. It was amazing. We were an invincible team.
We moved around quite a bit during this three-week-long trip. I kept hauling an especially heavy bag of Rose’s in and out of the truck. Finally, I asked her what was in there. “ My shoes” she replied. “ How many pairs of shoes did you bring?” I asked. “ seven” she said. “ Why on earth did you bring seven pairs of shoes?” I asked. Her response was “ You told me to.” While she was packing for the trip she asked how many pairs of shoes she should take, I replied “ several,” but Rose heard “ seven.” This was one of those times when we suspected that a hearing aid was in her future.
Our family toured around Yellowstone, the Grand Tetons, the Badlands and Devil’s Tower. The only health issue Rose had for most of the trip was hiccups. The hiccup spells would last for long periods of time. It was a side effect of one of her medications. Epilepsy did not show up until we got to South Dakota. We camped at Custer State Park after visiting Mount Rushmore. It was a lovely place, but nowhere near a hospital, or anything else.
Rose and her brother were riding bikes around the campground while my husband and I fixed supper. We saw our son speeding toward us alone and knew that Rose had just had a seizure.
(Pause here. We are in South Dakota, near nothing, letting our daughter with epilepsy ride her bike. Were we crazy? Were we foolhardy, negligent, stupid?  No. We were living our lives. Epilepsy is like a terrorist waiting to attack. You can’t hide from it. It will come when it comes. We refused to keep sitting around waiting for the next seizure. Been there, done that.)

We jumped in the truck and drove to Rose. We hauled her and her bike back to camp. We waited for her to come to. We were concerned about broken bones. She was wearing a helmet, so probably no concussion. She had gravel in her knees. I was scared to do anything until she regained consciousness.
When she came to, we assessed the damages. No broken bones. Then it was time to deal with those knees. This part of the story always gets Rose a little mad. We had to carefully pick gravel out of her knees and bandage them. It was a painful process. She was upset with us that we had not taken care of this task while she was unconscious.

Seizure Mama speaks to parents:

We could have stayed home and waited for the next seizure. We could have forbidden Rose to ride her bike. She could have sat around the campsite watching her brother whiz past. But this is our life. Our family needed adventure and joy. We were going to live our lives to the fullest despite our fears. In those three weeks of wonder, we had one seizure and a lot of hiccups. That could have happened at home, but instead we got to see a spectacular double rainbow, Old Faithful, Mount Rushmore, a grizzly bear, and thousands of bison.
Get out there. Pack this damn epilepsy and go. But leave those seven pairs of shoes at home.

Blog or Bottle?

I used to feel like I might as well write my Seizure Mama posts on a note,

put it into a bottle and toss it into the sea.

But I knew better than this, so I have to share a story with you.

My other blog, floweralley.org, was a slow starter. That was almost four years ago.

I kept posting to myself for months.

I pretended my best gardening buddy was out there waiting to hear what I was planting.

I pretended they needed to know how to plant and tend their gardens.

I pretended that somebody out there needed me.

Then it happened, ever so slowly.

There were real gardening buddies waiting. They appeared from everywhere.

Every day I shared numbers and locations with my family, when they got home from their busy lives. I mattered. I was a gardening somebody. I was not alone.

Now, there are hundreds of followers.  I know them. I love them.

Now,  “The Flower” hums along with likes and comments. I hear from friends every day.

I am telling this for those of you that I follow who only have a double digit of followers right now. (Seizure Mama only has 16.)

DO NOT GIVE UP!

I read your words. You are saying something important. Really important.

Way more important than gardening.

You are doing a good job. I am sincere in this.

I am older. I have been where you are.

It will get better. You will get noticed.

Folks will hear your words, if they are true and heart-felt.

If I am following you, I consider your posts are worth my limited time.

No bottles needed.

Keep posting Amanda, Yaelle, Laura, Alec, Charlotte, Maria, Emma, Kevin, Clare, Dave and David.

(If I left out your name, forgive me. I haven’t finished my coffee yet.)

We are a team. Epilepsy people need us. We got this!

Everybody’s Mama/Flower

 

Story #32: The Cyst and the Scissors

We went back to our favorite medical complex for a kidney stone recheck about a year after the initial stone was found. At that point, Rose had been off drug 6Z. She had spent months drinking lemonade made from fresh lemons. She had been through various tests for conditions that might have contributed to the stone issue. All tests were normal. The new drug 7Z was not as great as 6Z, but that is a different story. We expected the “all clear” from the urologist after this visit.
Rose and I went back to a room for the ultrasound. Her dad stayed in the waiting area to read and nap. We knew this would take a while. Rose got comfortable on the bed as she was slathered with warm gel. Another spa treatment with a hefty price tag. The technician began rubbing her wand around Rose’s midsection. I watched the gray screen of the monitor. The young lady would rub Rose as she looked at the screen and click on the keypad to take pictures and measurements. Rub and click, rub and click. Pause.
The technician excused herself to us. She returned with her supervisor. The two discussed things quietly as they pointed to the screen. They asked Rose to roll to a different position. Rub and click. Rub and click. The first young lady left and brought a doctor back with her. There were more quiet discussions in front of the screen.
About this time Rose’s sleepy dad appeared in the room with us. Someone had gone out to the waiting room to get him. We knew something was coming. More stones? Really? Making all that lemonade for nothing?
No, it was not a stone. A mass had been found on her ovary during the procedure. The bad news was, it was about the size of a tin can. The good news was it looked hollow and was probably harmless. This is when Rose’s dad and I looked at each other and laughed. Crazy right? The poor child’s parents are laughing like a joke had just been told.
Surgery was scheduled for the coming weeks. Same hospital. We hoped it was a benign mass. We hoped that the surgery would not cause damage to the ovary. There would be a big scar. No matter.
We were once again among other parents with sick children. The other children had conditions that were much more serious than a cyst. We felt blessed to be in a good place to get this taken care of. We would get through this.
Rose’s dad and I took turns staying with Rose. We would see the familiar faces of other parents in the elevators and hallways. We lugged supplies and laundry in rolling baskets and colorful luggage. You could recognize other caregivers by their luggage and tiredness, sleep-deprived sentries silently going about their duties.
Rose saw the surgeon again for a recheck before she could be released. She lay on the examining table as he poked at her incision site. There was some swelling. He opened a new pair of scissors and made a hole in the stitched line in Rose’s abdomen to let the wound drain as Rose watched with fascination. That is the kind of patient she was. Watching and learning. Patient and student all in one.

Seizure Mama speaks to parents:

You do not need to look far to find someone who has more problems than you do. Every time we went into a hospital, we left feeling lucky. Remember this if you feel the need to have a “pity party” with a stranger while in a hospital.
As I was loading Rose’s clothes and games out of the hospital, I rode down in the elevator from the pediatric floor with another mother. She was obviously moving her child out, also. We had passed each other numerous times in the previous days. I looked at her luggage and exclaimed, “Hooray, we both get to go home.” “We are headed to hospice.” was her reply.

Fixing Zero

I check our stats at least once each day. I take a deep breath before I click.

I do not want to see a zero. I have worked too hard for a zero.

Zero means no one sees it. Zero means no one has been helped.

I hate ZERO!

So every time there is a zero, I go phishing.

I type in “seizures” or “epilepsy” and search for a place to drop our link.

How does this work?  It doesn’t.

You see I do not want other bloggers to feel the way I feel when I have a zero.

So I go and read their blogs and make comments.

That makes me feel like I have done something.

I may still have a zero, but I do not feel like a zero.

Seizure Mama

 

Story #28: The Epilepsy Monitoring Unit

It was past time to put all the cards on the table. We needed answers about where these seizures were coming from, why they were occurring, and what triggers were unleashing them in Rose’s brain. It seemed we had been trying to put together a puzzle without looking at the picture on the box. Would a stay at an EMU finally reveal the whole picture? Could we handle the whole picture when we got it?
Would this epilepsy monitoring unit give us the answers we needed? Would the electrodes finally locate the source of these electrical storms inside Rose’s brain? I felt like these hundreds of seizures were clearing pathways through Rose’s brain, so that the seizures could go farther and faster, like there was some kind of cumulative effect.
I was truly afraid of weaning her off her medications. Would these seizures be allowed to run unhindered through her young brain, or were they doing that all ready? All we knew was we were in the right place to get answers. We had faith in this hospital and its doctors and nurses. That in itself was a great comfort to us, even to Rose. We needed expert help and now we were closer to getting it. Risks or not, this was no life for Rose. She needed fun instead of fear.
The technicians that glued the electrodes to her head treated it like a spa treatment. Rose emerged with a lovely, long ponytail of colorful wires. She felt pleased and pampered. A gauze cap had to be wrapped over her head to keep the electrodes in place when she lay down. No matter, her flowing ponytail was a hit. The other end of the electrodes were hooked to a box in a pack that she wore allowing her mobility.
During our week-long stay, Rose had six seizures. It took four days of weaning down on her medications to get them started. Those last days were scary. Once the data was collected, some medications were returned, but on low dosages. I knew these dosages were too low. I showed one of the doctors our chart which showed that Rose had experienced a long and strong seizure on the same particular mix and dosages that Rose was leaving on. The dosages stayed low so a long seizure followed shortly after we arrived home. Emergency medications were used. A call was made back to the EMU, dosages were then raised.
I am a doctor’s nemesis. I am the mom with the clipboard and pen. Once during our EMU stay, a senior doctor came into Rose’s room with a group of medical students. I rose from my chair as they entered, clipboard and pen in hand. “Oh no!” slipped from the doctor’s lips as he saw me. I stood in the circle with the young doctors as they discussed Rose’s case. Mama and the medical students formed a circle around her bed, all of us trying to learn;  they to save the world, me to save my daughter.

Seizure Mama speaks to parents:

Weaning off medications is a scary necessity in the Epilepsy Monitoring Unit process. Without the medications masking the brain’s electrical activity the electrodes can detect what is happening. In the Phase I process the electrodes are glued to the outside of the skull. These sensors show the brain’s activity as squiggly lines on an EEG. These external electrodes cannot detect activity deep in the brain. This Phase I process lets your team see what is going on in the brain as the patient is doing different activities, including sleeping. Do not be afraid of the electrodes and glue. The glue does wash out eventually. You may need to use an oily substance, like mayonnaise, to remove it.
Do not expect answers right away. The team must meet together and discuss the results before considering the next course of action. This may take weeks. Be patient. Take comfort that more trained professionals are trying to help your child.

Dear Epilepsy

You have done it again. Shown up and ruined another event for Rose.

She is really upset with you. She said she wants you to leave and never come back.

Rose has been patient and understanding so far, but enough is enough.

It was her first volleyball game of the season. Must you crash it?

Her father and I feel it’s time we get involved.

So here it is Epilepsy. You have hurt Rose enough.

You are not welcome in her life, you never were.

She is ready to move on and you are still hanging around.

She has plans that do not include you.

She’s going to Florida with her friends this summer. You will not be going.

She wants to return to her last job in June. You stay away from there, too.

She hopes to get married someday. You are not invited to the ceremony nor the honeymoon.

If she has children, we don’t want you anywhere near her during the pregnancy.

Do not show up after the birth either.

We do not want to be mean and say that we hate you,

but you have taken enough from Rose and from us.

We have things to do that do not include you

so we would appreciate it if you would disappear right now, today.

You do not deserve another minute of Rose’s time.

Sincerely and seriously,

Rose’s Mama (Formerly known as Seizure Mama)

 

Story #24: Kind Kids

Of course epilepsy came on vacation with us. Rose had three seizures during our week at the beach. Two occurred while she was swimming in the pool. She always wore a life jacket in the water and someone stayed an arm’s-length away. I knew it was risky to let her swim, but she loved it so much. We live on a lake so our family and friends swam a lot. We could not forbid Rose from participating in something we all enjoyed together. If she seized in the water, we just held her until the seizure ended and carried her out to a lawn chair to sleep afterward. We suspected extreme temperature changes triggered seizures, and so we tried to avoid the water in the mornings when it was cooler. We also covered Rose with a towel when she got out so she would not get chilled.
Rose also loved the ocean,but swimming with her among the waves made me a complete wreck. I was afraid we would both go under if she seized in the ocean. She was content to go in for only a few minutes and then play in the tidal pools with her shovel searching for little fish and shells, and building sand sculptures.
One day Rose and I had just walked down onto the beach and picked our spot on the edge of a tidal pool. I set down our bags and towels just as Rose fell face first into the sand. I placed her on her side to seize, as I tried to wipe off some of the sand that stuck to her face. A nice lady nearby offered me a bottle of water to wash her off. The seizure soon ended, but Rose was covered in wet, sticky sand. I swaddled her in a towel and sat close beside her to wait out the thirty minutes or so it would take before she woke up. My family could see us from the porch of the condominium, so I knew help would arrive when someone spotted Rose lying still under a towel.
While I was sitting quietly beside Rose, two boys about her age walked by. They were carrying a surfboard, table-fashion, covered with an assortment of shells and seaweed. They both glanced at Rose as they passed, but soon put down their board and walked back to me. They asked what was wrong with Rose. I explained that she had had a seizure but would be fine when she woke up. I asked about the treasures they were carrying on their board. I shared that Rose would have loved to see their haul from the sea if she were awake. They walked back to their board and one returned carrying a giant pin shell. “Give her that when she wakes up” he said. We still have this treasure.

Seizure Mama speaks to parents:

There will be many children who do not understand seizures. Some children will be afraid of your child after seeing him/her seize. There will be a stigma. It will be harmful and painful.
There will also be children with great kindness, who will be protective of your fragile child. They will be loyal friends. Relish the memories of the kind kids. They are the angels of this troubled world.

Another Epilepsy Book

I just finished reading another epilepsy memoir.

I am amazed my PTSD did not stop me from finishing it.

It was well done and had many funny parts, but it was not useful to me.

This is my fifth memoir of this type. Only one has helped me.

The others have left me depressed and fearful for Rose’s future.

I will not be loaning these books to her.

I do not want our book to do this to our all-ready-traumatized target audience.

Our book is far from a pleasure read.

There is no way to sugar-coat seizures and stay true.

This where you come in.

WE NEED ADVICE.

I want Rose’s book to be helpful, not harmful.

I plan on asking her to add a section to stories below the

“Seizure Mama speaks to parents”  called “Rose speaks to patients”

Do you think that hearing Rose’s voice after some later stories will take some of the sting out?

We want this book to help people.  First Do No Harm!

Seizure (Everybody’s)Mama

 

Story # 18: Drug Changes Change Rose

Things fell apart. Drug 4L had been added to drug 3S after the seizures during the holidays. At first drug 4L made Rose mean. Getting her schoolwork done was a battle. Either she would not or could not concentrate. Were these changes due to the new drug, the new home bound situation, or the seizures? Her ear infections continued, so antibiotics were frequently in the mix.
We kept records of all her drug dosages and combinations, along with seizure descriptions on a chart. We couldn’t keep all of it straight unless we wrote it down. The months were a blur of seizures, side effects and sickness. I read books about epilepsy and researched epilepsy drugs and treatments. It was all so confusing. How could we help our Rose if we did not understand this disorder and the effects of its medications? I felt helpless and hopeless. Rose was changing as her drugs changed.
Appointments with the neurologist became very frustrating. The partner of the practice had left, so our doctor was handling a double load of patients. We used to feel like there was a set plan for Rose’s treatment; now it seemed like one long experiment. The doses for drug 4L kept increasing and we saw nothing but side effects. Her seizures became longer and stronger. We must have missed the window of effectiveness for drug 4L.       Finally it was dropped and drug 5Z was added to her doses of 3S. Experimenting with the wrong drugs and dosages went on for months. Every few days, Rose would have a long, strong seizure. She would spend a day or two recovering before another seizure knocked her back down. I did not leave her anymore. I was too scared.
Sometimes on the weekends when Rose’s dad was home, Rose’s brother would ride the trails through the woods around our house. I would go with him carrying my camera and a walkie talkie. If a seizure occurred, her dad could call me to come back. I would hike through the woods and allow myself to cry. This was the only time I would leave the house. I walked the paths in our woods relieved to be out of our sad house where the walls kept closing in.
I never let Rose see me cry. We did not want her to see us saddened or scared. We were losing her. Her essence was disappearing. She was a groggy, foggy, tired mess. The drugs were not helping anything. The seizures were wearing her down and the drugs were ruining the time in between them.

Seizure Mama speaks to parents:

I am ashamed to look at the records from these terrible months. Why did we not get a second opinion sooner? Why did we not demand to go to an EMU? The awful reason was that we thought going to the EMU was a big step toward surgery. I had read about the different surgeries that were used to stop seizures. I wanted to give every drug a full chance to work. When I look back at her charts of medication combinations now, I am horrified.
Drug changes were being made frequently and almost in a random fashion. I think the neurologist was on overload and was pushed to try things because of my constant calls and letters. She was seemingly experimenting with various possible remedies.
It took the terrible scare of Rose going toxic for us to decide that enough was enough and seek a second opinion from a different neurologist in a different city. That was a turning point for us. Don’t wait that long.

Story #17: Just a Mama

I was involved in all the activities Rose was involved in. Rose went to Sunday School, so I taught a different Sunday School class and was part of the Christian Education Committee. Rose went to Bible School, so I was in charge of the crafts. Rose went to elementary school, so I volunteered as a Rainbow Reader and PTO grade coordinator. When Rose joined the Brownies, I became an assistant leader. We were tethered together by the epilepsy. We kept going because she kept going.
When the seizures started coming frequently Rose quit going, but I was left with all these responsibilities. I wanted to stay home with Rose, but I had to attend each organization’s meetings and events. I had to go on without her. I tried to keep up with my various leadership and supporting positions. This meant my going everywhere alone. I went to school with no student. I went to Brownies with no Brownie. I attended church with no little churchgoer Rose.
The absurdity of this became all too apparent when I had to step over my unconscious daughter to go to a Brownie meeting. I had arranged for my friend, a dental hygienist, to come to teach lessons on dental care at this particular meeting.  I felt obligated to attend. The girls were to earn Dental Care badges. I went to Brownies to be with the daughters of other mothers while my daughter stayed home with her dad.
Rose arrived at the meeting later all crumpled and squinting, determined to get her Dental Care badge and eat her snack. It seemed ridiculous for her to be here among all this noise and activity while looking like she needed to crawl in a hole and hibernate. This event was the beginning of my shedding some “mama obligations” in the community.
It was hard to pass these torches to other mothers. Most of them worked. I had all ready shut down my garden art business again when the seizures started back. Now I could not find people willing or able to replace me on my various committees and in my volunteer positions. No one stepped up to take over my volunteer jobs; it was me or no one. I had to drop a few balls and leave the teams. Family came first. When the seizures were at their worst, all the other things did not matter anymore. I was just a mama, and falling short at that.

Seizure Mama speaks to parents:

Remember why you do what you do as a parent. If the activity is not important to your child, give it up. Signing up for many extra activities will only frustrate you both. Do only what you both enjoy together. Let your child choose. It’s their childhood.