My hobby gives me so much joy. It comes naturally to me. It’s easy. It’s fun.
It is gardening.
I have chlorophyll in my blood. I come from a long line of plant people.
I love gardening and I love blogging about my garden.
My mission, on the other hand, is hard. It causes me sorrow.
Twenty-four years of taking care of Rose while waiting for the next seizure or side effect was difficult.
Remembering these experiences is painful.
Writing about these struggles sends me back in the trenches.
Why do I do it?
Because I know how it feels to fight a losing battle; day after day after day…
I know how it is to feel unlucky, cursed and damned.
I can’t stand thinking that other mothers are doing it alone.
So I will stay the course.
Sending out a beam of light to a mama in her darkness.
Hang on Sister! Flower is here.
Seizure Mama/Flower Roberts
Story #8 Gilligan at the Lab:
Rose’s drug 2D required periodic lab work to check blood levels.She has always been a passive patient. I did not expect her to resist any treatments based on prior experience. So, I was surprised when we had a struggle getting some blood drawn at the local hospital.
We waited in the waiting room to be called. I thumbed through magazines while Rose sat near the television. When her name was called, I picked her up to head back to a room. She squirmed, so I switched her to my other hip. The lab technician was a middle-aged man. Since Rose was small, she was positioned lying down on a table for blood to be drawn.
“No, wait!” she said.
“But we need to get your labs done. It’s our turn.” I reminded her.
“No, wait! ” she yelled. Rose began to squirm and cry and point at the door.
The man asked if he should tie her down to the table. Now, Mama wanted to yell.
I explained that Rose usually did not resist labs. I also pointed out that if we tied her to the table today, we would have trouble just getting her in the room next time. I took Rose back out to the waiting room. I calmly resumed looking at magazines and she went back to watching the television. I nonchalantly told her to let me know when she was ready to get her labs done.
I kept peeking out from the magazine, watching her. What was different about this time? It was not long before she came and stood beside me. I glanced up from my magazine. “Ready,” she said.
I informed the receptionist at the desk that we were ready to try again. Her name was called. We went back into the room. She calmly lay on the table. The blood was drawn without incident.
As we were walking back through the waiting room to leave, Rose pointed to the television and said, “No more Gilligan.”
She did not mean she wanted to “wait” to get the blood work done. She wanted to go back to the waiting room and finish watching Gilligan’s Island.
Seizure Mama speaks to parents.
All the tests and labs that may be required for treatment of epilepsy may be confusing to your child. You need to put up a good front. They will follow your lead if you act matter-of-fact about the procedures. Discuss what is about to be done. You may even want to draw a picture of the needles and wires. That way they will know what to expect.
I knew that if I let this lab technician tie Rose down to the table this time, that I could not even get her back into a room next time. She would, however, be happy to come back to the lobby to see Gilligan.
I can not give up on my mission as Seizure Mama because I know that there are mothers out there who feel alone in their struggle with a child with epilepsy.
YOU ARE NOT ALONE.
I have been where you are. You will get through this.
Part of my heart belongs to you.
I will not give up on you, just like I did not give up on Rose.
Story #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.
Long before the rest of the population was hooked up to technology,
Seizure Mama was wired.
My first two technology tumors were a beeper and bag phone.
For you young people, a bag phone back then weighed about thirteen pounds.
It was the size of an encyclopedia.
If there was an emergency with Rose,
the beeper went off with the number of the person who called.
I would unzip my “encyclopedia” and call them back.
I carried this phone in a giant purse or backpack everywhere I went.
When I want to whine about having to wear a little pack with my phone in it now,
all I have to do is think back to the beeper and bag phone days.
That shuts Mama right up.
We had our annual appointment with our hero neurologist yesterday.
Much of the appointment was spent discussing the importance of sleep.
Rose is a night owl.
She has a third-shift life while the rest of the world sleeps.
There is a kink in her schedule this summer.
She has a first-shift job.
Sleep deprivation is a seizure-provoker.
Rose cannot drive if she has another seizure.
A sleep-aid was prescribed.
Will she take it?
That’s up to Rose.
“Mama-Uber driver” would appreciate it.
Is Rose adult enough to make the best choice?
Old habits are hard to break.
I am hoping for wisdom and maturity.
We shall see.
Story #6 Be Brave:
Rose had seizures everywhere. On these many occasions, I plastered a smile on my face and looked folks in the eye as they glanced down and walked by. What’s so 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.” to the patient?
What choice do we have? Seizures disrupted ballgames, picnics, award ceremonies, bible school, birthday parties and dinners in restaurants.
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 Rose 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 and afraid.
Seizure Mama Speaks to parents:
Seizures may show up wherever you go. Please do not stay at home wondering and waiting. Other people cannot understand what you are going through if you do not tell them. Most folks truly want to help, but do not know what to say or do. Do not waste your emotional energy getting mad at others because of this. I do not know what to say to my grieving friends. I am always afraid of saying the wrong thing. But what does my silence say? Be brave!