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

Trauma and Time

It is Sunday again. I am home. Rose is back at college. It is like last week never happened. Ian came and went without us. We were busy with our own personal disaster.

Being in the hospital is like time-traveling. Everything else disappears. All your focus is on the problem. All other issues are put away for another day, after the emergency is over. Nothing else matters.

The trouble last Sunday night was not a seizure. It was a stroke. Rose had a stoke in her dorm room. She is 29 years old.

She was transported to the local hospital where she was diagnosed and given the clot-buster, tPA. Then she was transported to a big, wonderful hospital. This is where the hole in her heart was discovered. It has been there since birth(a PFO) but decided to sling a clot through it on Sunday night.

Rose rapidly improved after the tPA. No one could notice anything abnormal except her speech is slower and she has trouble finding words. She has regained all functions on her left side. She is left-handed.

Last week’s schedule was as follows: Sunday= stroke around 8PM. Monday= tests and scans. Tuesday= more tests and scans. Wednesday= plans for future treatments and appointments made with specialists. Thursday= released from hospital, keep Rose with us in hotel and do her laundry. Friday= take things back to college but keep Rose with us as we stay in a different hotel near the school. Saturday= drive home without Rose. REALLY?

Did all this really happen? Was it really just a nightmare? Did I time-travel? I wish this were fiction and it was all a bad dream, but no. It all really happened.

Now, I am home alone, puttering around catching up on laundry and tossing old food from the refrigerator. A week was stolen by a stroke and a clot and a hole in a heart. This will be repaired soon. We feel lucky. Rose had help arrive at every turn. I say they were angels.

Now, we are all supposed to carry on like this trauma did not happen. Her dad is back at work. I am walking around in my “Mama Fog” trying to function.

Rose called today. She talked more slowly. I put my cell phone in my pocket on speaker and folded laundry as she talked.

She says she is keeping a bag packed and ready by her door in case anything else happens. (Like an expectant mother.)

This is who Rose is. A future Emergency and Disaster Management professional prepared for her next, personal emergency.

Proud, Grateful and Lucky Mama

More to Say

Just when I thought we were through, more lessons arrive.

We are in an ICU due to a stroke from a hole in Rose’s heart.( Look up PFO.)

ROSE IS FINE NOW…

Here are the lessons for you parents.

1. Know the phone numbers of your child’s friends. This was critical. We got a strange text from Rose with EMS at the end. We knew something was wrong, but could not get her.
A friend on her floor, whose number I had, alerted me that Rose left her dorm in an ambulance.

2. Your child must share their condition with others. Rose’s suitemate called 911. The local hospital gave her tPA before transport to a bigger hospital. This saved Rose. She is recovering because of quick intervention.

3. Your child needs to keep 24 hours of medications on them if possible. It took the hospital 20 hours to get one of Rose’s medications to her room. We were sweating bullets.

That’s it for now. When I entered Rose’s room in ICU, one of her few sentences was,

” Mama you had better start that second book.”

Jeez

I’ll Leave You Here

I sat down with my copy of the book to see what comes next.

I was surprised to see the word, STOP.

The last chapters are saved for the book only. My goal was to post the first fifty-two chapters with a ‘Then and Now’ follow-up.

This project ends just as Rose turns thirty.

I have done what I set out to do. I have shared our stories so that parents everywhere can find them and gain whatever they can from our experiences.

I am ready to move on.

It is my hope that someday Rose’s voice will appear here instead of mine. I also hope she will write her next book. All that will be up to her.

If you need me in the future, leave a comment or email us at seizuremamaandrose12@google.com

Your friend,

Seizure Mama/Flower Roberts

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