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

Revelations in the ER

Chapter 52 of Seizure Mama and Rose by Flower Roberts (Amazon)

My sister and I rushed into the Emergency Room to find our parents. We located them in one of the cramped curtained cubicles. My parents’ young neighbor had awaited our arrival. We thanked her as she slipped out. My mom was in the bed,and my dad was in the only chair. We did not share the fact that Rose’s graduation was followed by a seizure in the parking lot. We were all focused on what the doctor was saying about Mama and then the ruckus started on the outside of the curtain.
The first sounds were from a woman who was clearly miserable. She was loudly complaining about getting no help for her problems while a female doctor was calmly explaining why help had been delayed. This conversation grew louder until the patient was screaming about pain and needing to pee. I sent up a prayer for this poor soul. Apparently her physician had not authorized the medications needed to calm her suffering. I peeked out of the curtain to see her stumbling to the restroom carrying a specimen cup.
That’s when I saw the policemen, a swarm of blue right outside my mama’s curtain. I knew we were in a big city, but did we need this much security? As I was pondering my question, I heard the saddest sound I have ever heard. It was a long, soulful howl from a person around the corner and out of my view. The hair on the back of my neck stood up. My heart felt heavy in my chest. What was wrong with this person? Then there was a scream and a crash. The blue swarm encircled the source of the sounds.It was a young man in ragged clothes with matted hair. One of the officers was talking calmly to him, almost cooing to him like one calming a scared, wild animal. The other officers’ faces showed concern for the desperate man. They were letting him release his anguish while forming a barrier between him and the rest of the people in the Emergency Room.
I stood behind my daddy’s chair with my arms wrapped around him. Only a curtain stood between us and this sad situation. I was fervently praying with tears rolling down my face. I was not afraid. I was not praying for my mama. I was not praying for my Rose. I was praying for this stranger who was at the end of his rope, broken and alone.
Those officers were heroes with compassion. They formed a barrier between us and this chaos with compassion. When you are looking for angels in the world, you may not see their halos and wings. Instead, they may be wearing badges and uniforms.
So Seizure Mama’s pity party was abruptly ended by a look at real suffering. Once again, I was shown how lucky I was. I am a slow learner, but I eventually figure it out.

Seizure Mama speaks to parents:

A complete stranger crashed one of my pity parties again. It had happened before in our favorite hospital as I was riding down the elevator with a mother who was taking her child to hospice, while I got to take Rose home. It has happened over and over again, but I keep forgetting these life lessons. That we are blessed with family and friends, insurance, and health care. The biggest blessing of all is that Rose has developed fierceness and strength. She will endure. This I know.

Two Down One Night

Chapter 51 of Seizure Mama and Rose by Flower Roberts (Amazon)

The day of college graduation finally arrived. Rose was super excited. She led the procession of over four hundred graduates. She looked glowing in her cap and gown with gold tassels and sash. She had worked hard for this day for six years. She had taken classes at the community college part-time and worked at a restaurant just down the street. This ceremony was a victory for all of us.
We arrived early so we could save the entire front row for family and friends. I was there with my camera to get photos of Rose and her fellow students as they strolled past. I knew hundreds of these students from either teaching at the middle school or at the college. It was like a reunion for me. What a wonderful night for our family. My parents could not attend due to mobility issues, but my sister was there, along with Rose’s dad, his sister and her husband, Rose’s- two cousins, her brother. Rose’s other set of grandparents made it to the ceremony. It was a big event for the whole family, one we thought we may never witness. But here we were watching our Rose, smiling brightly as she led the line of graduates to their seats. She looked so happy and beautiful.
The ceremony was really long, but I enjoyed watching many of my former students parading across the stage. I felt like I was graduating, too. In a way I was. I would no longer be driving here every day and spending hours in the library, the science building, and the parking lots. Our time here was officially ending. Rose had a plan of what to do next, but I did not.
The ceremony ended. There were more photos and many hugs. As we were all parting ways, my sister’s phone rang. Our parents’ neighbor called to tell us that our mother had fallen down some steps backwards. She was being transported by ambulance to a hospital. The neighbor was driving my dad to the Emergency Room. The hospital they were going to was over an hour’s drive from where we were. We decided not to share the news with Rose. We wanted her to have this special night without the worry.
My sister and I raced to her car. We drove to my house to pack a few things before heading to the hospital. As I was rushing around my room throwing clothes in a bag, my cell phone rang. The man on the line stated that he was with the Emergency Medical Services. He told me my daughter had fallen and gotten injured. “No,” I said. “My mother has fallen. We are on our way to the hospital now.” “No ma’am,” he replied. “Your daughter has had a seizure and gotten hurt.” I collapsed on the bed screaming. My sister rushed into the room. I told the man to call my husband’s phone. I gave him the number. I hung up my phone only to hear another one start ringing in the other room. My husband had left his cell phone at home charging. My phone rang again. It was Rose’s friend Carol trying to find anyone in Rose’s family. I gave her Rose’s brother’s number. She called back minutes later to tell me Rose was fine now. I was hysterical. Lightning might as well have struck me. God PLEASE, I am not this strong! Two people I loved needed me and I was apart from them both. There was nothing that I could do. Helpless and hysterical! The combo from hell!
My son called the house phone soon after. He and his dad had run back up the street to the college to be with Rose. Her dad got on the phone and told me to head on to the hospital to take care of my mama. My sister drove that hour as I rode in silence, wondering why life can’t just come at you in single file instead of a damn Charlie Foxtrot.

Seizure Mama speaks to parents:

Yes, I was mad. I felt like God had pushed my mama down those steps while I was busy at Rose’s graduation. Then he lured me into a car with my sister and threw Rose down in the parking lot the minute my back was turned. My status as superhero had been sabotaged!
I was about to get another lesson about my not being in charge. I don’t know where I got the idea that I was a super-hero, but that role kept getting snatched away from me. Instead I would get stuck being a helpless observer, on the sidelines watching life go on with no help from me. My mama had fallen down. I wasn’t there to save her. My Rose had just had a seizure. I wasn’t there to help her either. How dare God take the wheel of my car? Who did he think he was dealing with?

Does this sound like the rant of a grown woman? How about a crazy woman? Let the anger out. Then take a deep breath and do what’s within your power. No superpowers available, just you doing your best for your child.

Seasoned by Hardships

Whenever I feel like fate is trying to take me down, this is one of the times I look back on for strength. People say trouble comes in threes, but in my experience two is the norm.

This ‘Status in the Lab’ occurred during one of the scariest events of my motherhood. The fact that it was not Rose who was in danger kept surprising me. It was my super healthy, athletic son. My cross country runner, triathlete could not walk because of a mundane virus and his own overzealous immune system. He was fighting for his life against Guillain-Barre’ Syndrome. He was saved by a quick-thinking GP and an experienced neurologist. The expensive vials of IgG were worth the thousands of dollars. His determination brought him back to us, whole but thinner, twenty-one days later.

Each time I looked at him in the hospital bed, I had to do a double-take. Rose was always the one lying listless surrounded by medical professionals. I remember the first morning I woke up in our favorite hospital and looked over to see him. I was in shock and disbelief. I thought this was surely a nightmare and I was still sleeping.

I was teaching night classes at the community college then. Not one of my co-workers stepped up to take my place. I had never worked in a place with no camaraderie before. I was hurt by their lack of support. I was not going to let my students suffer, so I kept lecturing and having lab through the horrible weeks of my sons treatment and rehab.

Rose had to be dragged back and forth through this stressful period. I should have known to make other arrangements for her, but she insisted on spending time with her brother each day. There was no time to take her home, so she had to come to classes and labs with me.

The lab did stink with preservatives. Whole cats and animal organs were everywhere. I used to find dissection fascinating, but was over it after twenty years of pointing out the same parts.

So here was Rose, tired, stressed and in a stinky lab waiting to go home. I think that seizure thresholds have many factors that push the brain along until it crosses. All those factors collected that night. The two red drinks and then the stink did poor Rose in. Her brain could not take any more.

So there I was, Seizure Mama, on the floor again. Helped by my loyal students. A mother of a former student on one side and a crying sister of a brother with epilepsy on the other. I clearly remember sitting on the floor. Pausing in the moment.

Fate had us down again, but we got up again. Both my son and Rose are stronger people. I am a stronger person. I still cry like a baby when things get tough, but underneath those tears is a seasoned survivor.

Another TERRIBLE TWO pair of events will occur later in the book. We got through that, too. I am not grateful to be hit with double jabs in this life. I am grateful that I got back up. That is the lesson.

Mama

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