Seizure Mama and Rose

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

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

If you have a garden, you have a future.

Rose planted two new roses in her garden yesterday.

She also planted two new Asiatic lilies.

She is doing PT to regain strength on her left side.

She also has a new grief counselor.

We are making progress here.

We are grateful.

MAMA

That wonderful team at our favorite hospital did it again.

I must admit that I lost hope this time. Decades of drugs have not been kind.

Rose reacted to a new medication in a horrible way.

It had to be slowly removed and slowly replaced. The transition will take time.

Rose is Rose again to our relief.

Those doctors and nurses know they did not just save Rose, they also saved her family.

We are grateful beyond words.

Mama Flower

My Heart is Still in Winter

There is a cost for the journey through a child’s chronic condition.

A toll is taken not just from the child, but also from those who care for her/him.

We all know about the financial costs and the toll on time.

But there are other concessions; imbalances in relationships, loss of trust, outlooks are tarnished, joy is stolen.

What is left after the battle looks nothing like your expectations of future, family and friends.

Maybe the battle is over for us. Maybe the hole in Rose’s heart was the cause of the seizures. Maybe the epilepsy is gone as I always dreamed.

The cost of this journey was steep. We are worrisome, skittish and weary. We all need to heal, not just Rose.

This is my warning to you, Other Mother. Do not lose yourself saving your child.

Mama

We are in the follow-up phase of the September stroke and December PFO closure. Rose has seen both her neurologist and her cardiologist. The news is all good so far.

We have one more phase of the journey to go. Rose will be going to our favorite Epilepsy Monitoring Unit next week to tweak her seizure medications. This will be the final leg of this 2022 journey that included totaling her car by running over a boulder at night on a mountain road, a stroke, the flu, a kidney stone and an ovarian cyst. There was a seizure or two, but who’s counting?

I will report the results of the EMU stay when we have them. We have done this before so we know the ropes.

Our family is drinking from the fire hose again. Resilience training at its best/worst.

Don’t you worry folks.

Mama

https://epilepsytalk.com/2022/12/20/40-different-kinds-of-seizures/