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

Status in the Lab

Chapter 50 of Seizure Mama and Rose by Flower Roberts (on Amazon)

My son ended up in the Intensive Care Unit at our local hospital due to an isolated auto-immune event. He was transferred to our favorite hospital, which is an hour’s drive away. We made the drive back and forth every day. My husband and I tag-teamed for the three weeks while our son was in the hospital and rehab so that he was never alone.
I still had to teach my classes and labs at night at our local community college. Rose had to accompany me to my classes and labs during these weeks. We would visit my son each day and leave in the late afternoon to drive an hour back toward home and eat supper on the way. We would then go directly to the college. I would leave Rose in the lab during the lectures in the adjoining room. Then my students and I would enter the lab for another three hours.
On this particular night, Rose and I had stopped and eaten fast food on the way. Rose had gotten an ice cream float made with a red soft drink. Earlier that day she had bought a red drink from a drink machine in the hospital. It was a stressful time. No one was eating or sleeping well.
On this particular evening, I finished up the lecture and my class and I entered the lab. We happened to be dissecting hearts that night. There was definitely an aroma in the laboratory. Rose complained about everything stinking. I had just gone over the cat’s heart parts with the class. I asked Rose to help me put my demo cat back in the bag. As soon as she finished, she said she felt strange.
I told her to come around behind the front station with me and sit on the floor. She went into full seizure as soon as she sat down. One seizure finished and another started.
I alerted some of my students to assist me. Many were Certified Nursing Assistants taking classes to get into the nursing program. They knew just what to do. When the third seizure started I covered Rose with my lab coat and administered her emergency medication. The seizures stopped.
One of the students that assisted me sat on the floor beside Rose and cried afterward. She shared that her seventeen-year-old brother had seizures. No one had ever told her family about this emergency medication. They usually had to transport him to the hospital at times like this. This girl stayed beside Rose long after the lab was over. This young woman and the mother of one of my former students at the middle school stayed late. The two finally agreed to leave only if they could find a campus security officer and bring him to the lab. I truly appreciated these two women staying with us. I was exhausted before class even started and now I was totally spent physically and emotionally.
This was the event that led to Rose avoiding Red Dye #40. We remembered our neighbor’s beagle had seizures if he ate red colored food. Since that night in the lab, Rose has avoided red foods and has read food labels. It is amazing how many non-red products contain Red Dye #40. We believe that red dye had been one of her triggers all along. I wish we had figured this out sooner.

Seizure Mama speaks to parents:

First, we have learned that Red Dye #40 does affect the brain. Think of all the brightly colored foods that are marketed to children. Once you start looking at all the chemicals in foods, you start to wonder what the effects of those might be on a young body and brain trying to grow and develop.
Second, everywhere I go, someone knows someone affected by epilepsy. You are not alone. Many folks don’t share their stories until they connect with someone who will understand. Then the flood gates open.

WARNING: Misery loves company. Maintain your boundaries. You don’t need to host a pity party everywhere you go. Listen, share a story, maybe some good sources for information, such as the Epilepsy Foundation of America. Then gently remove yourself.
When I taught middle school I used to get very upset about bad things happening to my students. Rose would put my face between her hands and look into my eyes and say, “You are not their mama.”
Sometimes you have too much trouble of your own to be borrowing someone else’s. Remember whose mama you are. You may have a big heart, but you’ve got your hands full.

The Same but Different

Chapter 49 of Seizure Mama and Rose by Flower Roberts (Amazon)

Any medication change brought its own changes in Rose. Sometimes she got lethargic. Other times she got aggressive. Some medications caused headaches while others caused nausea. One even greatly increased her appetite.
But there is one medication we all know by name. It is on her charts as an allergy. It gets its own story because of all the trouble it caused. When you are down, you remember what kicked you while you were lying there helpless. This drug hit her hard even before she fell and she remembers it. This is the story of our experience with that medication…and its twin.
When a person has had seizures as long as Rose has, the medication choices get more and more limited. We had already tried the main anti-epilepsy drugs in various combinations. If they worked in the beginning, some stopped working for her. Most drugs never worked or had horrible side effects.
Our hopes for Rose being seizure-free began to dwindle, so our tolerance of side effects became greater. I didn’t care if the medications made her blue and bald, as long as they stopped her seizures…or so I thought.
We slowly added this new drug F to her cocktail. She got mean. The more we added, the meaner she got. It was like the drug had magnified teen-angst by ten. Rose argued about everything. She was totally uncooperative. I remember telling a friend at church that if our house caught on fire and I screamed “The house is on fire! Get out!” Rose would probably respond ” No. My room won’t burn.”
I was with her almost all the time, so I was her target. It was hard to be verbally bullied by a normally nice person. She had been a drugged bully before, but had calmed down as her brain adjusted. After weeks of abuse, I was hoping for things to either improve with Rose’s disposition or get worse with some side effect so we would have a reason to get rid of this drug F. I got my wish. Things did start to deteriorate, but we held the line because we knew we did not have many more drug options left.
Right about this time our insurance changed. We could no longer go to the small drug store where everybody knew our names. We had to move all our prescriptions to a big box pharmacy. When I picked up the new prescription of the “Mean Teen” medication, I remember distinctly the pharmacist asking if we had questions about this drug. My reply was something like, “No thanks, we know all about its side effects already.”
I put the new bottle in her medicine basket with all the other bottles. This drug F was one of the pills that could be cut in half if needed. Rose’s dosage required that she take both whole pills and half pills. The tablets were elongated and peach colored. Every Sunday evening I would fill up her weekly AM and PM medication organizer with all her different dosages for morning and night. She had a separate, one-compartment per day organizer for the afternoon doses.
For efficiency, I would cut many tablets in half and put them back in the same bottle with the whole pills. That way I did not have to cut up pills every Sunday evening. If I cut too many pills before the refill, I just put two halves in the compartment instead of a whole pill.
Things began to change as soon as I started filling in the pill organizer with the new bottle of medication. The tablets looked the exact same. The name on the bottle looked the same, but something was different with Rose. I first used the new whole pills and the extra halves from the old bottle. This was probably a fortunate thing.
Rose began to wither. She lost her meanness, but also her spunk. The changes in Rose were gradual, but noticeable. I was pondering what could be going on. We had not changed medications. Why this transition?
The answer to this mystery came on Sunday afternoon, right before disaster struck. I will always be grateful for the timing of this discovery. Otherwise, her dad and I would have been clueless. I sat down at the kitchen table to refill the pill organizers. I had run out of the halved “Mean Teen” pills, so I needed to cut a new supply. I pulled out the pill cutter and got busy. The new pills, as I said, were the same shape and color as the ones from the little pharmacy, but they did not cut the same. I grabbed the bottles to compare them. On the old bottle the drug name ended in “-al.” On the new bottle the same root name ended in “-ate”. The big box store had switched us to a generic form of “Mean Teen” without informing us. The pharmacist had asked if I had any questions. I did not because I thought it was the same drug.
I immediately alerted Rose’s dad to the switch and how I had discovered it. Rose was sitting at the table with us. Our conversation was interrupted by explosive vomiting. Then Rose hit the floor. The onset of the seizure was so fast and her convulsions were so strong that we knew we needed back-up. Her dad dialed 911 as I lay under the table in the vomit cradling her head in my arms.


Seizure Mama speaks to parents:
Generic drugs are not the exact same as brand name drugs. We had discovered this earlier with another drug. Not only can the generics have a certain percentage less or more of the drug itself, they also have different fillers. All this can make a difference. If I had paid attention better, this reaction may not have happened. I have to tell myself that the “Mean Teen” drug in any form was not a good drug for Rose.
I did call a person at the Epilepsy Foundation of America to report the look-alike generic. I also wrote a letter to the State Pharmacy Board to share the story and to suggest that generic drugs not be allowed to mimic the look of the brand-name version. This impostor generic could have caused serious injury to our precious patient.
Pay attention to all drugs all the time. Look in the bottles before you leave the pharmacy. We have had to hand back the wrong drug several times. Be alert. Be vigilant. Use a pill organizer and lock the bottles up in a filing cabinet. You never want to wonder where some pills went. These drugs are expensive and dangerous if used incorrectly.
We should have tossed this drug to the curb long before this event. Hindsight is 20/20. This drug’s side effects almost ruined my family. Desperation should not lead to destruction.

Enabling is Disabling

If a person can do something for themselves then he/she should do it for themselves. Enabling a child creates problems that would not have existed. PLEASE do not do more than is necessary as proof of your love.

The message you send by this is damaging. The person becomes dependent. They equate your love with your sacrifice. You will be tested.

I am adamant about NOT feeding wildlife. The animals become dependent on that artificial food source. They stick around and do not forage for themselves. Then the females go into estrus with those extra calories. Now you have more wildlife eating your handouts. This is a never-ending cycle that gets worse with time. You create moochers.

The more you do for your child, the less he/she will do for themselves. If you stop suddenly, they resent it. If you cannot stop, you resent it. Applaud every effort he/she makes to do things independently. You will both celebrate every milestone.

Independence is the goal, NOT dependence. Maybe you can do all your child’s laundry, chores and homework now. You will not be young and energetic forever. You will not be able to do everything for them eventually. Who then?

Do you buy them things to make them feel loved. When you finally retire, you will not be able to afford spoiling him/her with your consolatory gifts that you give to try to make up for the disability. They will want cars and houses instead of toys and candy.

You will get old and he/she will still expect you to take care of them. You will not be able to do this. You will be worn out and tired. He/she will be young, selfish and demanding, not caring and giving. We call this “spoiled.”

Stop yourself RIGHT NOW! TODAY. Break this poisonous pattern. You both will benefit in the long run. They need to be as strong as possible without you. You will not live forever. Do not make them needy, greedy and helpless.

Strong children make strong adults. Independent people make the world better. If dependence is necessary, then all must accept this. But do not be strong for him/her or your child will be deprived of developing his/her own strength.

I made this mistake. I am still struggling to right this wrong. I have stood down and watched Rose rise to the occasion. We are both better people and separately stronger. The tether was broken.

A child as strong as possible is the goal. A child as independent as possible is the goal.

Stand down. Watch what happens.

Mama Bear

We Both Go To College

Chapter 48 of book Seizure Mama and Rose by Flower Roberts(Amazon)

After Rose’s graduation from high school, she enrolled to take classes at the local community college. She started out with just one class called College Success. It had been a rocky summer. We had traveled across the country to the famous clinic in hopes of a more effective treatment. We had waited weeks for our “No-hope Diagnosis.” There were still some seizures and side effects. I had previously quit my teaching job at the middle school to take Rose to our favorite nearby hospital for another stay in the EMU. Rose and I both were starting over.
I had taught night classes at this college years before, so I applied to do that again. I had not taught at this level for over a decade. Ironically, I had quit my job teaching biology there when Rose’s epilepsy had started when she was four years old. Now I was back again, taxiing Rose to class and hanging out around campus in case she needed me.
Our first day of college was a horrible beginning to the semester. Rose was always a little behind schedule back then. It took extra effort to get her anywhere on time. We barely made it to her first class. I sat down on a bench outside the classroom to study the lesson I would use for my own first class. This is when I noticed that I was wearing my house shoes. Here I was at my new place of employment on the first day of class, walking around campus in my bright purple house shoes. So much for a professional first impression.
This first class for Rose was a struggle. She was on the new “good” drug from Germany, but also on a new “bad” drug that made her unreasonable and stubborn. The arguments we had during this terrible period were nonsensical and embarrassing for me. It was like she was going through the terrible-twos and terrible-teens at once.
Sometimes our conflicts occurred in public. I handled these as best I could, but many times I had to leave the scene. They were humiliating confrontations. We never knew when these strange tiffs were coming. Rose had become a bully and I was becoming a defensive witch.
After a particularly brutal confrontation in front of my boss and the dean at the college, I moved out of our house- first to my parents’ vacation home, and then to my son’s apartment. I honestly had no intention of ever living in the same house with Rose again. I was her taxi, cook, wallet, and maid, not her mother. All my enabling had reduced me to nothing except her useful possession. She had no respect for me. There were no limits to her demands.
During my weeks-long vacation from Rose, I was amazed at how easy it was to be by myself and go places alone. No struggles. No arguments. Just me deciding what I wanted to do and doing it. I felt the emotional draining stop and I started to heal and be strong and separate. I was still me under there!
During my hiatus, my husband took Rose to look at a small apartment near the college. He did not mention her moving out ahead of time. She freaked out because she thought we were throwing her out of the house. Rose does not like change. She considers her messy, crowded room her sanctuary. This trip to the rental property was traumatizing to her. I think she realized that she was about to divide our family, not just hurt me. It was the first time she ever considered the thought of leaving home. She was nineteen years old at the time.

Seizure Mama speaks to parents:

It is hard to keep appropriate boundaries when the person in need is your child. It is especially hard when your child has a disability. This humiliating at the college was my “Waterloo.” I had always run block for Rose, so that she had fewer hurdles to get over, but my handling her issues for her sent the message that she could not do it herself. Instead of appreciation, enabling caused anger towards me and herself.
This was unfair to her and to all the other folks she has relationships with. I have spent these last few years “standing down” and letting her get through her own struggles. She has become more independent. It has been a relief for us both.
Enabling is a hard habit to break, but you MUST do this. If your child can tie his/her own shoes, then he/she must be expected to tie his/her shoes everyday. It is your child’s responsibility. This precious “baby” of yours must be expected to do whatever he/she is capable of doing. Do not make him or her needlessly dependent on others. Nobody likes needy and greedy.
You are a separate individual. Keep appropriate boundaries. Set a realistic example. Get a team to help. This is your life, too.

The No-Hope Diagnosis

Chapter 47 of Seizure Mama and Rose by Flower Roberts ( Amazon)

The team of specialists were to meet to discuss Rose’s case mid-July. They would look at all her records and tests and collaborate on her case. Then the famous lead physician would call with results and recommendations.
We waited impatiently to hear the news. We were on edge. Were we headed into a surgery? Would we be testing a new drug?
When the call came, it was not what we had hoped for.
There were a lot of percentages rattled off over the phone. At some point my brain switched off. All I remember is the no-hope number of 5%.
If they opened her skull and placed electrodes on her brain there was a 50% chance of finding the source. If they found the source and removed it, there was a 50% chance of improvement, along with a 2% chance of morbidity and a 5% chance of serious complications.
The final percentage of any chance of improvement was 5%. I have this in writing. Five percent is way too close to zero percent.
After the phone call, I cannot remember how many days I walked around in a fog.
Seizure Mama speaks to parents:
THEY WERE WRONG!
The best and the brightest experts in their field still aren’t God.
Was it Rose’s new drug from Germany? Was it our cutting out red dye #40? Did something happen during that slow-motion seizure that dammed up the flow through her brain?
We really don’t know why she began to improve after that.
So if you get a no-hope diagnosis, remember Rose.
There is always hope. Even if it is just 5%.

HEY PARENTS,

Maybe this was supposed to happen to us, so when it happens to you, you will not lose hope. I wish I could send a message back to myself 10 years ago to tell me to hold on. Never would I have imagined that Rose would graduate from a university. Keep the faith.

Mama Flower

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