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There have been many lessons from epilepsy for my family. One of them is to keep facing forward.

Our past is too heavy to carry with us, so we learn to leave it as much as possible.

Rose seems to be carrying too much right now. There are unresolved events that haunt her. I get this. I am afraid for her. She cares too much about issues and people.

Do not judge me by these words. I am this way, too. My heart has been too open, so I avoid situations that might steal it. This is not selfish. Only other highly sensitive people get this. We must guard our psyches by isolating ourselves. If you do not understand this, then you cannot understand this.

Rose is in a sandwich between a sad past and an uncertain future. The level of uncertainty she lives with is over-the-roof compared to many. She is fiercely determined to be independent. She deserves this.

Everyone is back in their proper places today. Facing forward. Hoping for a peaceful, healthy future. Isn’t that what we all want?

Mama Flow

My pity party was short and sour.

I must suck it up and put on my big girl pants.

Rose is coming home tomorrow.

I must hide the elephant(fear) from her and be brave.

She is such a champ. I cannot let her see her mama being a wimp.

We have been here many times before.

I know my role quite well. Fake it ’til you make it.

Wish me luck.

Mama

The past has come back for a visit. Time has crossed itself.

Revisiting the past is very different from the past coming back.

Maybe it’s the PTSD talking. But I feel that I am being haunted.

I cannot write a THEN and NOW for the ‘Emergency Delivery’ chapter because THEN IS NOW.

It took me ten years to work up the courage to start our book, Seizure Mama and Rose. I took another ten to write terrible drafts. I needed to get far away from the reality to face what happened.

I do not want to be ‘Real-time Seizure Mama.’ That role belongs to Dave, Leigh Ann and Caleb’s mom. They are young, strong and brave. I am not these things. I am tired and damaged.

I just mustered up enough courage to face a past with epilepsy. Where the hell will I find the strength to face a future with it.

Don’t be mad. Don’t feel abandoned. Much has happened that I do not share.

I will be back. I do not know when.

I need to heal a bit.

We need hope. You got any to spare?

Flower

I wanted to be the mother on the opposite shore of seizures, cheering the swimmers on.

But Rose is back in the water.

She had a seizure in spring after a death, another under stressful circumstances in September, then one after a shower last week. She was dazed for days. Her speech was slurred.

She says there’s a knot on the back of her head. She called EMS. She took her rescue meds.

What does a mother do when she is two and a half hours away from her endangered child?

I emailed every possible person who could help Rose. Yes, I was a pest.

I wracked my brain for a trigger. Found a suspect. More emails… more pestering.

Then I straitened up the epilepsy file cabinet, organized all epilepsy books, put four years worth of drug slips into a notebook by reverse date grouped by function.

Now what? What will I do with the rest of this fear?

Covid fear caused me to sew hundreds of masks and mail them to friends. That’s a lot of fear folks!

You know this fear. You know it will not be ignored.

I will find something productive to do with these waves of fear that keep me in the water.

There will be no peace for a while for Seizure Mama and Rose.

Flower

Rose was busy playing in our workshop, which has a concrete floor. Her dad and I were both busy with our own art and construction projects. Rose was making something of her own while standing at my workbench. She suddenly seized and fell to the floor between the workbench and the sink. Thankfully there was a large, but dirty, rug under her on the floor.
The first dose of her emergency medication did not stop the seizure. We waited a few minutes and then used the second syringe. Finally the convulsions stopped and she lay still on the floor. Our relief was short-lived. We realized that we now had no more emergency medication and it was a Friday afternoon.
I called our friend at the pharmacy and explained why needed more of Rose’s emergency medication as soon as possible. Unfortunately,this particular drug was not kept in stock because it was very expensive and had a short lifespan. It also had to be protected from temperature extremes. The pharmacist explained that the drug would have to be ordered and then delivered, which would take time.
He knew, just as we knew, that we may not have that kind of time. We could be in the middle of a status situation with nothing to save Rose. The pharmacist was thinking out loud when he offered that maybe he had some of a “dead girl’s medicine” at the other pharmacy. A dead girl’s medicine? We needed a dead girl’s medicine to save Rose. I was so stunned that I hung up the phone before I started crying.
We knew that Rose’s emergency bag with more medication was in the principal’s office. It was 4:30 on a Friday afternoon, but maybe someone would answer the phone. When I called the school’s office, the assistant principal answered. She and the guidance counselor were there wrapping Christmas gifts for needy children and their families in the community. We told her what we needed and that one of us would immediately come and get the big red bag. She offered to deliver the bag to us, so that we both could stay with Rose.
Here was one good person taking her time to do something helpful. What a blessing. We could relax. The drugs were on their way. Rose would be safe now. What a gift that was.

Seizure Mama speaks to parents:

Saved by the bag again. I cannot stress this enough. You must always be prepared for a seizure. It is the only way your family can carry on responsibly and safely. You have no choice about where the seizures occur, but you can make the choice to always be prepared.

I want to add here that SUDEP or death by seizure will always be in the back of your mind if your child has the tonic clonic/grand mal type of seizures. Hearing the pharmacist offer a dead girl’s medicine, first sent my mind to her poor family and then to the possibility of Rose’s death. No one wants to have these thoughts. There is no point in dwelling on such sadness.

Yes, living with epilepsy is like living with a terrorist or a time bomb. But none of us know what will happen in the future. Your life is now, with this precious child of yours, so live it now. I call it “nower.” It means the power of now. That’s all anyone has. Live now. Whatever will be, will be.

https://blog.feedspot.com/epilepsy_blogs/

We are #17!

We finally made it home from the hospital that Friday evening. Rose’s dad and grandfather headed back down the interstate in our truck to retrieve all my garden art from the booth of the show we had hurriedly abandoned that morning. Rose had been given a loaded dose of drug 3S in an IV. She slept on the way home. My parents came and stayed with me, my son and Rose so that we would not be alone after such a traumatic and exhausting day.
Rose slept for the first several hours. When she woke up and saw that it was dark, she realized that she was missing her friend’s birthday party and sleepover. She had been really looking forward to the event, even though we had warned her she could not spend the whole night. She cried about not being able to go to her friend’s house. I calmed her down and she went back to sleep. She slept in bed with me that night so I could keep an eye on her.
During the night, she woke up screaming “I want my lunch”. Rose usually packed her lunches for school and got to take a special lunch that she picked out herself on Fridays. She had awoken and realized that her special lunch had been left uneaten at school and would be ruined by Monday. She loudly repeated “I want my lunch.” over and over again for almost an hour like it was a mantra. I tried to calm her, but there was no consoling her. By the end of that hour, Rose and I were both hysterical.
I always tried very hard to not let Rose see me upset. We kept a brave face during most of her seizures. This time, I was truly scared that something had happened to her brain. I tried telling her we would get her a new special lunch for Monday, but I knew what she really wanted. She did not really want her lunch back. She wanted today back. I wanted today back, too. Rose knew she had epilepsy again. That awful nurse was right: it had never left us.
The little girl who had the party and her mama came to visit us the next day. They brought Rose a bag of goodies from the party. I always appreciate gestures like this. They mean so much.

Seizure Mama speaks to parents:

Your hearts will be broken over and over again. You must keep going. You must keep living with this enemy. You cannot let it steal your the life from you, your family, and most of all your child. Yes, it will knock your baby down, but you must help him/her right back up. Getting up is what is important.
Do not let epilepsy keep them down. Do not let it have an extra second of your lives. Epilepsy may steal minutes from days, but you can fight for the rest of the time. Make that your life- the time between. Make that time the best you can make it.

(We started calling this event the beginning of Phase II Epilepsy.)