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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/

https://epilepsytalk.com/2022/12/19/epilepsy-glossary-100-terms-defined-2/

I wish Rose were more like her dad. He never seems to internalize stress. He calmly handles emergencies, while I spin mentally and emotionally.

I call this stressing and obsessing, “getting in the maze.” There is nothing productive about going around and around about something upsetting. I have to consciously avoid going into the “maze” because it is very hard to get out of it.

When I feel my brain go into repeat mode, I shake my head to reset it and get busy doing something physical. I take walks, fold laundry, bake something, rearrange a drawer…any task that involves physical movements will do.

Both my children have the “maze tendency.” I do not know if this is due to nature or nurture. Either way, I do not want to be responsible for this unproductive response to stress. My son fights off this negative response. Rose falls right into it when things get tough and out of her control.

She called from deep inside the “maze” last night. Who can blame her? She is a double/double major and has graduation pending on two very difficult classes. One of these classes has most of its assignment points coming in after Thanksgiving break. Graduation is December 17.

Remember, Rose had a stroke in late September and missed a week of classes. She was emailing her professors from ICU. She has never slacked off.

I tried to talk her out of the “maze” but she was spinning so out-of-control I had to get off the phone and calm myself down. She then called her poor brother for support. He is her rock.

I fear for Rose’s well-being. This is too much stress for anyone. I told her to “face forward with faith”…but I know there will be a lot of fear as well.

If she does not graduate, it will get very complicated. No degree. No dorm room. I do not think these two classes are offered in the spring. I do not want to think about it.

I used to be a hard-ass, by-the-book college biology instructor at a community college. I regret that so much as I watch Rose stressing and suffering. I hope I never caused such pain to my students.

Mama Maze