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

Rose in the Maze

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

The Magic Soap

Rose gave me this handmade soap while she was home. It has a fairy, flowers and a bee on it. I will keep it on my desk. I am pretending that it is magic soap. I wish that this was true. My family needs some magic.

Rose no longer trusts her body after the stroke. Every tingle and bit of numbness causes alarm. She is back at school. She is trying to focus on her last classes before graduation. Her body is a distraction. She is afraid. Call it PTSD or paranoia, she fears another event.

If this soap were magic, I would give it to Rose to wash away her fear. It is hard to believe in science and medicine when things are left unhealed and questions left unanswered. She will have the tiny hole in her heart closed in December. She will have blood tests to see if she has hyper-coagulant blood. Maybe then she can relax.

I used to get disgusted by folks who ignored the facts and believed whatever they wanted. Now, I understand them. Sometimes reality is too harsh and harmful and it is easier to believe in fiction.

It would be wonderful if this soap was really magic. I would wash Rose and my mom and sister. They would be well and healed. Then we could do what we wanted instead of what is necessary.

I must be a realist. But, I consider tPA magic. It stopped Rose’s stroke. It worked just as well as a magic wand. I will be forever grateful for that.

Still, I will sniff my magic soap and dream of a time with no worries.

Flower/Seizure Mama/Stroke Mama

Rose is Home on Break

I am so happy to have this chick under my wing for a bit. She was seriously shaken by her latest calamity. Rose will be on aspirin until the tiny hole in her heart is repaired. Her medical team feels that it will be safe to wait until after graduation (December)to do this out-patient procedure.

Rose had a meltdown with loud venting and crying in the cardiologist’s office. Two nurses swooped in for support. One patted her while the other gave her a pep talk. Nurse Dana told her that worrying is like rocking in a rocking chair. No matter how much you do it, it won’t get you anywhere. Bless these women.

The stress level has dropped in our family. We were all shaken by the stroke and the close calls involved. I suspect that Rose has some residual PTSD from the series of events. She almost refused the tPA!!! She has been going over the episode in her mind, over and over. I told her to write everything down to get it out of her thoughts.

As I write she is getting her hair done. She has seen many friends since she has been home. We will be shopping for shoes and a graduation dress. We will visit my mom in her new location. I want her mind elsewhere as much as possible.

We are trying to avoid the worry circuit. I call this ‘The Maze.’

We are all doing our best. I am grateful for family and friends and especially dedicated medical professionals.

Seizure Mama/Mama Hen/Big Chicken

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