Status at Softball Practice

Chapter 40 from Seizure Mama and Rose by Flower Roberts(on Amazon)

The softball saga continued. I stayed at the middle school to finish up some things before heading across the road to get Rose after practice. We now had cell phones. Mine rang. Someone from the team called to tell me that Rose had a seizure in the field house. As I was driving to the high school the phone rang again. Another seizure had started. I entered the building to find Rose on the concrete floor among metal pieces of equipment. Another strong seizure started just as I arrived.
I covered Rose with my coat and administered her emergency medication. The seizure stopped. Two of her teammates waited with me. It seemed like forever before she began to stir. I was afraid that she had been injured in the fall. I was hoping there were no broken bones or a concussion.
When she came around she was angry. It took a long time to calm her down. I worked very hard not to break down. I don’t know how I got to be such a good actress. I guess it was teaching middle school. Walking through fire without going up in flames is an acquired skill.
I still remember my panic. I was afraid she would break free from me and get hurt on all the equipment. I was so grateful for those two girls. They did not know what to do, but they stayed with us. Just having them there was a comfort. One of these girls is now a high school teacher and coach. Bless her.
In the end, Rose did not make the team. She was disappointed, but I was relieved. The main thing was that she had the guts to try and stick with it. She felt the fear and did it anyway. I am still learning to be that brave.

Seizure Mama speaks to parents:

I wanted so badly to say no to softball. I felt it would be too much for Rose. I had learned not to get in her way. She already had enough hurdles to get over without her scared mama being another blockade.
It’s so hard to be brave over and over again. It is exhausting and draining. The alternative is much worse. This is your child’s life, seizures and all. Don’t postpone life until the seizures stop. If we had done that, we would have waited decades.
This is the hand that you have been dealt. Bluff if you must, but play the hell out of it.

Under the Umbrella

I carry this umbrella twenty-four seven. You never know when it might rain.

It is difficult to see the sun, airplanes and puffy clouds, but one never knows when a storm may show up. It is best to stay undercover.

I can go to the fair, but I cannot ride the rides with this umbrella. I have never ridden a Ferris wheel or a roller coaster. No umbrellas allowed.

I would love to learn to ride a horse, but it would be difficult to hold the reins and the umbrella at the same time. I guess that goes for riding elephants and camels, too. Bummer!

I want to canoe across the lake, but I cannot paddle while holding this umbrella. So I stay on the shore and watch others journey across. It looks like fun.

I have seen the ocean, but I cannot swim in it because of the umbrella. The waves might knock me and the umbrella down. The ocean is so unpredictable.

I would like to race go carts, but the umbrella will affect my steering. I might wreck driving with one hand. It is too dangerous.

One never knows when it might rain, so it is best to always be ready. Staying dry is very important. This umbrella is my protection.

PARENTS:

If seizures were rain.

Would hauling around a cumbersome umbrella really keep your kid dry(safe)?

Mama/Dad are you an umbrella?

What is a fear of a seizure preventing your child from doing?

Fully living?

Is it worth it?

Umbrella Mama

Not Being There

My new reality is that Rose is hours away. No matter what happens, I will not be there to help.

I can no longer hover and smother.

Rose hopes to live outside the country. I will not be there either.

Rose owns her life now. She also owns her epilepsy.

After decades of my being constantly on duty, I have been dismissed.

I am thankful in a way, but the worry is something I will carry with me no matter where Rose goes.

That is my new project. Letting go of the worry and the fear.

Rose has done it. So should I.

Mama Flow

Down Under the Basket

Chapter 39 from Seizure Mama and Rose by Flower Roberts (on Amazon)

I did not show up until the very end of this event, so this is a secondhand story. Rose’s brother was on duty for this seizure. He had taken her to a high school basketball game. She was helping sell tickets to raise funds for the girls’ softball team. Rose was determined to try out for the team. She had been going to practices after school to prepare for tryouts. I drove across the road in the afternoons from my school to hers to wait for her to finish practice.
I parked my car so that I could watch the field. I was a nervous wreck during these practices. I couldn’t believe I was seeing my fragile Rose running and batting like a champ. She was so tough and determined. How could she be this brave?
Rose was circling the basketball court in the gym trying to sell tickets during breaks in the game. I am not sure if the seizure occurred between quarters or some other break in the game. All I know is that she had a seizure under one of the baskets. Down again on that familiarly hard gym floor. Her brother made his way to her. She told us later that she was blind and had to touch him and hear his voice before calming down.
When her dad and I arrived, she was on a stretcher. We transferred her to our van and drove her home.
No harm. No foul.

Seizure Mama speaks to parents:

Epilepsy everywhere, no time to stop and think!
Let them try out for teams. Let them go to games.
This is your life, not a dress-rehearsal.
What if we had sequestered Rose at home for twenty-four years?
Who would she have become?
She would not be the super strong young lady she is today if we had hidden her away.

Rose wanted me to add that after this seizure, strangers touched her while she was still blinded by the seizure. This scared her very much. She frantically called for her brother whose touch and voice she recognized. I can’t imagine how terrifying it would be to be touched while blind and confused.

I dread writing a Then & Now about this chapter. It still haunts me because I was not there!

Listen to me MAMAS you cannot always be there. That’s a tough part of this. I will ponder what I can tell you that will be helpful. “Not being there.” is where we are now with Rose far away. This is a necessary part of the journey. I must relinquish my Seizure Mama role and pass the ‘epilepsy baton’ to its rightful owner…Rose.

I do wish one of you would give me a pep talk!

A Seizure Dog Sees Rose

Chapter 38 from Seizure Mama and Rose by Flower Roberts

One afternoon, Rose and I were shopping in a large department store. Rose was several yards away from me between the clothes racks. I could see the top of her head. I saw her head turn to look at two people and a dog strolling through the aisle in her direction. I knew she had spotted the dog’s service vest. I also knew that she would be interested in watching the dog at work.
The big, shaggy hound was wearing a red triangular vest on its harness. The vest was a sign that the dog was a service dog of some sort. Our family had discussed the possibility of getting a seizure dog several times. Since Rose had no aura before most of her seizures, having a dog that could alert her that a seizure was coming would be a nice warning. Rose could at least get to the floor before falling down.
Rose watched the dog approach. The two adults were deep in conversation. They were paying attention to each other and not the dog. The dog turned and walked away from the two people until it stopped and stood in front of Rose. I watched as my daughter and this dog looked into each others eyes.
Both men were surprised by the dog’s behavior. One of the men pulled on the dog’s retractable leash and gave a command for it to return to the side of the other adult. The dog hesitated to leave Rose, and paused for a few more seconds before rejoining his human companions.
I spoke to the two people. I told them that Rose had epilepsy. Their looks of dismay turned into smiles. This gentle giant of a dog was a seizure dog in training. What they first thought of as bad behavior now took on a different meaning. The dog was a seizure alert dog. It somehow knew that Rose had epilepsy. His name was Mr. Biggles. He was with his trainer and new owner.
I got the name and number of the company that trained the dog. The threesome continued to slowly stroll around the store. Rose and I looked at each other in wonder. “How did he know?” she asked me.
It was my turn to be concerned. My first thought was that maybe he sensed an oncoming seizure, but I told Rose that possibly he could smell the seizure medications in her sweat.
Either way, I had a new hope for Rose. Maybe someday a dog could help to keep her safe.

Seizure Mama speaks to parents:

We have not gotten a seizure dog for Rose during these twenty-four years. We had other dogs while she was growing up, which would have complicated the training of a companion pet. We did seriously consider a seizure dog one during the times when her seizures were frequent. A trained seizure dog can be very expensive.
I did talk to a woman from this company about training a dog for Rose. She said that the dog must be trained while the companion person is having seizures. Rose’s seizures had become so infrequent that it would not be possible to train a dog for her. This was a mixed blessing.
Now that Rose is an adult, she may need a service dog just for protection. She goes places by herself. She is very independent. Several weeks ago, Rose had a seizure while away at college. It was at night while she was walking beside a road. A dog could have at least stopped traffic.

Big News

Rose is spending the summer in a darling apartment near her school.

She has a job and has her car with her.

This is her time to practice being an adult without her mama.

She is calling all the shots for two and a half months.

Then one more semester at the university.

After graduation the real adulthood begins.

We are super proud of our young lady.

Mama

Mama Gets a Ride in the Ambulance

Chapter 37 from Seizure Mama and Rose by Flower Roberts

Our whole family went to the mountains for the weekend. The weather was lovely. We were all so happy to see spring arrive. It was like a celebration. We wanted to stay out in the sunshine all day long.
Rose and her brother were playing catch in the back yard. There was a lot of missing the ball on Rose’s part, so there was a lot of running involved. We were just about to pause the game for a rest when Rose dove into the grass. We all gathered around her while her dad went to get the emergency bag.
We used one type of emergency drug after the first seizure. We used a double dose of the second type after the second seizure, which was longer. When the third seizure started, we called 911. Rose was heading into status epilepticus. We weren’t sure we could safely use any more of her medications.
Her seizure activity diminished before the EMTs arrived. Rose was still unconscious and bluish, so we figured it was a good idea to transport her for oxygen and maybe some injected anticonvulsant medications. It’s always a comfort to have some professionals around. Well, for the parents it is.
Rose has never been thrilled to wake up to the strange faces of folks in uniform. Some of these occasions have been traumatic for her. It’s always best to see a familiar face after a seizure. It cuts down on the post-ictal confusion. Sometimes she can’t see for a bit after a seizure. I know that is scary.
The nice young men loaded Rose on a stretcher and bounced her down the backyard and into the ambulance. I tried to explain that Rose would need me when she came to. I was informed that only the patient could ride in the back. It was against regulations they said. Rose was not a minor. What could I say?
Just as the ambulance doors were closing, there was a loud, She-Hulk shriek from the vehicle. Then there were sounds of a ruckus inside. Sometimes Rose wakes up meek and pitiful, while other times she comes to like a raging bear disturbed from hibernating. We knew quite well what was going on in the back of that ambulance.
The ambulance doors flew back open. One of the nice young men was waving me over yelling “Mama, mama, mama!” I had no choice but to go against policy. I couldn’t let Rose hurt the poor men. So I climbed up into the back for my first-ever ride in an ambulance.
I do hope it will be my last. The benches alongside the stretcher were very narrow and unpadded. I bounced along holding onto Rose and the stretcher. She was still trying to hit people. I had to get in her face and sternly say “No Ma’am!” several times. This lets her know I mean business and that she is being rude.
We spent a few hours in the Emergency Room of the nice new hospital. Rose rested. She was given something to stop the vomiting which sometimes happens during or after a seizure. Glad that didn’t happen during my ambulance ride. That would have spoiled it for sure.
Seizure Mama speaks to parents:
The various emergency departments have their own rules of engagement. They have to follow their procedures once they get involved in your child’s case. They will be liable for mistakes made. If you do not agree with what they are doing, you can decline treatment and transport. If your child is no longer a minor, then your child has to refuse or agree to treatment. Sometimes this involves waiting for the patient to regain consciousness.
Be thankful for the back-up, but remember that you know more about your child’s particular condition than the medical workers do. You and your child will have to live with the results of mistakes. Do not let an overzealous EMT bully you. Stand firm with a smile.

The Scars

The wounds will heal, but there will be scars. Scars outside and scars inside.

Your job is scar management.

This may include applying Mederma or ScarAway gel.

There may be ice packs and wrapping and bandage changes.

It’s the scars inside that need the most attention.

Sometimes children think they cause what happens. Adults may fall into this trap, too.

Whether you believe it is God or fate or bad luck or random events does not really matter.

The longer you live the more you will see bad things happening to good people.

Not all of the bad is random, sometimes mistakes are made to bring on hardship.

But many times the disease, accident or abuse is random and does NOT involve blame.

If you model the blame paradigm for other things, your child may follow suit.

They need to know they are not the cause of their seizures. No blame involved.

Nor should they be made to feel like a victim of epilepsy. This brings on neediness .

This disease will leave some scars. Your job is to minimize these not encourage them.

If you have trouble with this, replace epilepsy with another disease.

Diabetes, asthma, scoliosis, cystic fibrosis, Down’s syndrome…

Do these diseases involve blame? Are these patients victims?

I guess since epilepsy comes and goes we see it differently.

It comes and leaves scars. Then goes away for some healing time.

Use that time between to address both types of scars.

Mama

Broken Jaw Birthday

Chapter 36 from Seizure Mama and Rose by Flower Roberts

I was called over the intercom in my classroom on Rose’s birthday. The message was “Get to the high school; she’s in the gym.” I rushed to my car and drove across the street. I cried on the way. Really? On her birthday? Can we not have this special day without a seizure?
I arrived to find Rose on the hard wooden gym floor with a stranger’s sweatshirt under her head. It was covered in blood. The other students looked sad and afraid. I tried to put on my brave mama face, but I am sure my red eyes told the truth.
I forget how I got her to the car. I am sure it involved a rolling chair and handing my car keys to someone I barely knew to drive my car to the curb. Trauma does some memory editing. My only memory is of her bloody face and swollen jaw.
I drove Rose to the Emergency Room. This was one of those times when I put on a comedy routine in the hospital. Rose was my straight-man sidekick. She was a real diva. She demanded more warm blankets and bigger pillows. She wanted ginger ale with crushed ice. I remember laughing at all Rose’s complaints and demands. I joked with the nurse about having a ‘Princess Patient’ in her care. Rose did not think my joking was funny. I think the nurse was afraid of us both.
Her jaw was x-rayed. The results were said to show no break, but you could look at her and tell that was not true. No point in arguing with an x-ray. After the x-ray came the stitches.
Before the work began, there were those awful numbing shots. Poor Rose handled them like a champ. Her chin had a inch-long split just underneath her lower jaw, right in the middle. An amazing doctor made tiny, perfect stitches as though he were quilting. I was amazed at his skill and precision. I told Rose that I wished she could watch him working. She would have been fascinated.
So this is how Rose spent her birthday that year, getting x-rays and stitches. No party, no pity.

Seizure Mama speaks to parents:

Rose’s jaw really was broken despite the x-ray results. This led to TMJ(temporo- mandibular joint syndrome)afterward. Our suspicions were confirmed weeks later by her orthodontist. She also had crushing of some roots of teeth in her lower jaw.
I want to point out how important it is to pay attention to everything that goes on in a hospital, even if you are squeamish. I watched every stitch by this doctor. I appreciated his skill and carefulness. He knew that he was working on a young girl’s face. He wanted to make sure the scar would be minimal.
This was not the case with Rose’s recent experience with stitches after an accident at work involving her arm and a box cutter. I knew the stitches were being done haphazardly by a Physician’s Assistant. I wish I had taken a picture of this mess with my phone.
We joked that Rose would like thirteen stitches because thirteen was Rose’s lucky number. She should have gotten thirteen tiny stitches instead of the eight big ones she received. This injury was particularly bad. I really did feel faint as I watched, but faked my way through, again.
The stitch-witchery was confirmed by a doctor who worked in dermatology during the follow-up examination. The stitches were too big, too tight and too far apart. Thankfully the cut was on her arm, not her face. The wound never healed properly and the scar has widened. It looks like a three-inch-long fish skeleton, minus the head and tail. This story may be included near the end of this book. It’s hard to finish this thing when the stories keep on coming.

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