Adultish

Rose bought a shirt with “Adultish” across the front.

She said it was soft and on sale. She thought it was funny.

When she wears it, I think of how we got to where we are now…

an old, tired mama with an adultish daughter.

Rose should be socially-smart and savvy at twenty-six.

She is not. It’s not her fault.

I blame epilepsy and me.

I have been the helicopter mother from hell.

I camped out at her preschool, because it was required by the church.

I volunteered at her elementary school…

when she was not home bound due to seizures.

I taught at her middle school, her high school was across the road.

I taught at her community college while she was there.

She used to refer to herself a “24/7” because she was with me 24/7.

We were tethered together for twenty-four years.

I ran block for her in too many incidences.

Over-protecting and over-compensating.

Mama bear on super strong steroids.

Trying to level the playing field for my fragile baby.

NOW, I am old and exhausted and Rose is adultish.

She says she needs the freedom to make her own mistakes.

Mistakes at twenty-six are so much bigger than mistakes at twelve.

I am ready to turn over the reins, but is she ready to take them?

She trusts and loves everyone like a child.

I am judgmental and paranoid where Rose is concerned.

I have a big heart too, but I will take down any threat to this adultish daughter.

We both worked very hard to get to this point in our relationship.

I will stand down as she steps up.

The mother-daughter dance is complicated.

Epilepsy has made it difficult.

Love is our music.

Seizure Mama

Trouble at the Lab

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.

Giving Up is Not an Option

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.

 

Our First Neurologist

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.

What People Say

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!

Our First Drug Failure

Story #4/ First Drug Down:

Rose’s first seizure medication was a chewable tablet we will call 1T. Now we knew that the cause of the seizures was always in her brain, not just showing up with fevers. The enemy was a resident, not a visitor. Our family was in a constant state of vigilance. I do not say this lightly. Our vigilance continued for decades. We were emergency-ready twenty-four/seven. Rose nicknamed herself 24/7 because of this. We all tried to play this down, but it was what it was. Epilepsy was the new center of our universe, but we tried to carry on as before.
With the drug 1T, Rose became more active and hungry. She seemed hyper-emotional compared to her prior happy-go-lucky self. Was this change due to the new drug or an after-effect of the big seizure? Her carefree childhood was transformed into a series of tests and medications and worried faces.
Our family planned a camping trip for mid-June. We hauled the boat and tent to a state park for a week of fun. Our campsite was along the shore of a crystal-clear lake. Some friends with a daughter Rose’s age came to visit and spend a day with us out on the water. Rose had a lot of fun on this trip. She made her own little playhouse inside a folded lawn chair. What an adventure.
Her dad and I had discussed what we would do if a seizure occurred during our stay here. We knew where the hospital was. We located the park office. There were officials around who could help if needed. We made our plans in case of emergency. We had the bag phone. We were cautious, but brave.
During the night on Wednesday, I was awakened by unusual noises and motion beside me in the dark tent. I quickly switched on my flashlight. Rose was seizing in her sleep. Her face and neck were covered in drool. Her skin looked splotchy. The seizure was short.
I laid back down on my sleeping bag, keeping a hand on Rose. I lay there thinking about what a crazy stupid mother I must be to have my baby here in the middle of nowhere, in a locked campground, in a tent, in the dark. This event was the beginning my paranoid hopes of buying a house across the street from a hospital. That way we would always have medical help close-by.
When Rose awoke the next morning, she was scratching her neck. I pulled up her pajama top. A prickly red rash covered her torso and upper arms. Her lips were swollen. The bag phone was used to call her pediatrician. His diagnosis was that Rose had experienced an allergic reaction to the new drug, 1T.
Camp was broken. The tent was bagged up. Supplies were tossed haphazardly into the pontoon boat and the back of the truck. We headed back to civilization and safety.
We stopped by the doctor’s office and pharmacy on the way home. Drug 1T was not the right drug. There were more to choose from. Lots more. Surely the next one would do the trick and stop the seizures without side effects. Seizures had been around for centuries. Surely there was an effective drug to fix this.

Seizure Mama speaks to parents:

A drug is a drug. It is a chemical compound, not a magic wand. It does what it does with the other chemicals in the body. Drugs are not dynamic substances. They work or they don’t. If a drug is not working, move on.
After trying several different drugs, we began to feel obligated to give each new drug more time, and sometimes more chances than it probably deserved. We were afraid to damn each one for fear there was not a new drug waiting in the wings. Learn their names. Know their half-lives. Keep records of their effects and side-effects. When the evidence shows the drug is ineffective, move to another or a new combination. Do not linger with a drug failure.
My charts of drugs and dosages, seizures, and side effects gave us confidence to move forward in terms of medications and treatments. It also eliminated “re-inventing the wheel” when we had to change doctors or go to a new clinic for tests.

Note: I will not be sharing drug names in the book or blog.

Being Everything and Nothing

Be aware Mama Bear,

that being everything

can make you nothing.

You will not look at yourself until you have no reflection.

You will have no shadow because you are the light.

You will morph into mortar and lose your own form.

You will be the ball in the game. Kicked around.

You will be the food on the table. Consumed or composted.

You will be washed, dried and folded with the laundry

just to be worn and dirtied again.

You will be the garden, planted then picked.

You will be everything to everyone, and nothing to yourself.

They will grow up and move on.

Then what will you be?

Save back a little bit for you Mama Bear.

Keep your kernel.

So when the need leaves

you can grow and renew

back into you.

 

Seizure Mama/ Fellow Mama Bear