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

They Saved Rose Again

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

The Toll

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

An Up-date on Rose

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

The Fear Face

I know that face. It flashes when there is the sound of a siren. That happened when she was getting her high school senior portraits taken. I bought that photo. Rose is standing up at a fence, arms folded and resting on the railing. The photographer had no clue that he was capturing something important.

I spent an hour or more taking Rose’s senior portraits on campus this Wednesday. Her purple gown fluttered in the breeze. This time it was difficult to get a photo without the fear face. Rose is only thirty, but she has had many battles with her own brain and body. I had to be silly to get smiles.

The stress is closing in. She is concerned that her brain is not up to the task. She is still healing from the stroke. I told her she was “drinking from a fire hose.” After graduation she needs to rest and heal, before searching for a job. She is still fragile. I feel her uncertainty. Her brother calls it ‘beat down.’

I want that fear gone. I want to see serenity in its place on her face. I tell her all I wish for her is to be happy, healthy and safe.

Mama

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