Will this ever be over?
I have asked for thirty years.
It is best not to count on a cure.
I hope better treatments and a cure comes,
but we cannot wait for that.
We are living now. Trying new drugs.
Transitioning and seizing.
No longer driving.
Time is passing.
Our lives are going forward with epilepsy.
Waiting for a cure is waisting valuable time.
Do not postpone your life.
Seizure Mama/ Flower
Author: Flower Roberts
seizuremamaandrose.org
Other Epilepsy Blogs
Hard Truths
Approaching the Holidays
It is time to prepare for extra excitement, less sleep and unfamiliar foods.
Be mindful of how activities affect well- being.
Our rules are NO RED FOOD and no late nights.
Not many activities are worth increasing a risk of a seizure.
Rose did have her first seizure since the stroke in September 2022. This means that the PFO was not to blame. We are disappointed but taking it in stride.
I will be Rose’s uber/taxi again. We hope she will start her career in a city near a college so that transportation will not be an issue anymore.
I will include a few links of advice for surviving the holidays that I have shared in the past.
HAPPY HOLIDAYS from Seizure Mama and Rose
Rose Makes it through Covid
We are late into the medication transitions of lowering dosages of Keppra and Onfi and going up on XCOPRI.
No seizures.
Rose has been doing Physical Therapy to regain strength after the stroke she experienced last September.
No seizures.
Rose has had Covid this week and is recovering nicely.
No seizures.
HOORAY!
Mom Blogs
Hooray Moms
Rose the Bridesmaid
Drug Transitions and a Wedding
This will be a summer of help and healing for Rose. She will continue Physical Therapy and Grief Counseling. She is also continuing to tweak her seizure medications.
Drugs transitions must be done carefully, one change at a time. The rate of change depends on the drug’s half-life. A longer half-life means slower changes.
Drug K can go down one dose per week. Drug O must go slowly because of its long lingering. Drug X reacts with Drug O, so there is a careful dance between the two.
This transition will take months to complete. There will be pauses to avoid surprises.
Rose will be in the wedding of her friend from pre-school. This is the friend whose parents rushed to the hospital to help Rose during her stroke and then drove to another hospital to stay with her until we arrived. These folks talked Seizure Mama down off the crazy cliff that night. They are family forever.
Rose will walk down the aisle and then sit down. This is so everyone can relax, especially Rose. She trusts neither her body nor her brain. We hope she will gain more confidence as time passes and she gets stronger.
There will be another pause as we take Rose on her graduation celebration vacation. This was postponed due to her heart surgery to fix the PFO(hole) that probably caused the stroke.
So off we go to celebrate our survival. Her brother is joining us. It will be a dream. We will relish every moment.
When we return home there will be more transitions and more therapy. When this healing is complete we hope Rose will be ready to start her career.
Look out world!
MAMA
A Time for Healing
Rose has spent the past four years plowing through college while putting her grief aside. She had to stay focused to finish.
We have lost some folks during those years. My dad died of cancer in 2020. Both my husband’s parents died in 2021 just seven weeks apart.
My mom has dementia, so the loss is slow but still very sad.
Rose could not stop to grieve. She was struggling to survive her double-double major schedule at school. She volunteered. She joined clubs.
The stroke set her back in many ways. It also forced her to slow down. She is in grief counseling and physical therapy this summer. She spends a lot of time in her room and in her bed. This worries me.
She also has been spending time sitting on the pier fishing. This has always been her happy place. I watch her sitting in the sunshine and feel calmer that she is home and safe.
Finding a job will have to wait. Rose needs to heal and rest. She needs to be repaired.
I took her to mama’s house yesterday. I took a nap while she puttered around the house and shop. I found her in daddy’s workshop sweeping. That was her way of helping Bop when he was alive. It is her way of grieving.
She needed to spend time alone in their house and I needed a nap. She pointed out the things she loved. Little ducks and pansy vases. Tiny plates decorated with flowers. She is still a little girl in some ways.
The house will be sold soon. Losing a place will be another loss. It was my home my entire childhood. I will grieve again for that house and shop and garden and swing…
My days spent with mama at rehab are bitter-sweet. She is still here but confused. She still makes us laugh.
Rose will rest and heal. I know she is slowly getting stronger and steadier. We are so fortunate that she has been cared for by excellent doctors and therapist.
I am grateful.
Seizure Mama/ Flower
Seizure Mama and Rose 