Seizure Mama and Rose

Do not be alarmed. I am not referring to copulating, although this is a scientific term.

This hybridized word involves physics, not biology.

I love the word because it describes a stage in between.

Flinking refers to a state between floating and sinking.

The density of an object is such that it neither floats nor sinks.

It flinks.

Suspended in the water below its surface.

Too heavy to float but not heavy enough to sink.

I do enjoy the concept,  but not the sensation.

It’s like the limbo without the line or the music.

I am not drowning. I am not swimming.I am not floating. I am flinking.

Motionless, powerless waiting for the current to shift and my density to change.

I have to follow through, before I can start something new.

Stinking flinking!

Flow

We wrote this book to help other families. It is not a pity party. I tried to include stories with lessons to them. It is blatantly honest, but kind.

Email me your address if you cannot get one.

This is our “Other Mother” mission.

I guess I will never be done. Not as Seizure Mama nor Rose’s Mama.

I have tried to make decisions for her separate from her epilepsy.

Why?

Is she separated from epilepsy.

Sometimes trying to be fair is sort of like trying to be stupid.

She is not separated from epilepsy, so why am I trying to make decisions like she doesn’t have it?

She wanted to study abroad, alone, in Central America over the summer.

I tried to say yes. I tried to consider her as normal. (She hates that word.)

I tried NOT to let fear be part of the formula.

A female alone. Learning the language. Eleven week$.

No for Rose. No for Epilepsy. No for mama.

I’d rather be safe than sorry.

That’s not fear talking. That’s just mama sense.

Mama

Thank you to JAHbookdesign.com

Joshua Holmes you are our hero!

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This is not my first round at restoring homeostasis.

I have been here numerous times. Camping out at a hospital.

Same circus, different monkey.

Desperately struggling to restore balance to someone I love.

Spoons to the mouth. Ice chips and water. Over and over.

Wash and dry. Cover and uncover. Up and down.

No end in sight. Day and night.

It is my parent this time, not my child.

An old body fights more slowly.

I must keep balance while helping restore his.

I keep telling this to my sister.

Nobody else can go down right now.

Not mama, not you, and not me.

One patient at a time please.

Slow and steady.

Stability.

Story # 32 ( December 2004)

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 on the screen quietly. 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 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 we 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.