Bad luck Luke

I got some bad news today.

My brother Luke was diagnosed with kidney disease. It is irreversible. He is not to the point of dialysis and hopefully if he keeps on a strict diet it will not progress further.

How could something like this happen? My brother is a health nut. Why??

Apparently all it took was being very sick, taking too much OTC pain reliever, and becoming dehydrated to lose over half of his kidney function. Without a family history of kidney problems, the doctor could offer no other possible causes. Who would’ve guessed something like this could happen to someone young and healthy? Did lifelong intense stress weaken his kidneys?

Today when I found out about my brother I felt a lot of anxiety. But the strange thing is that I felt anxiety about something else. The first thing I did was worry about the garbage. Today is garbage day and I had this irrational fear that I threw out my son’s wallet when I grabbed the garbage out of his bathroom. Totally crazy!

Then I started to feel anger. Why would God allow this to happen to my brother! Then I felt sadness. I almost cried when I thought what it would be like to watch my baby brother die. What about his family? Life is just not fair. Why do bad things happen to good people? Why do healthy people get sick?

Life, it’s taking the cards you have been dealt and playing your best game. It’s lifelong growing, building, and change. It’s not guaranteed to be pain free, but if you give it your best shot it’s worth it. Time is short and I want to look back satisfied that I did the best I could. I did not give up when things got rough, instead I tried harder.

I want a rock solid marriage. That is something else worth fighting for. Someday I might have to ask him if he loves me enough to donate a kidney. They are the same blood type if that matters, whereas the rest of us are not.

This post was originally written back in November. It was one of the drafts I saved because I was not ready to accept this much less post it. It’s hard to think of my brother as sick. Who knew that in a few months I would follow him down the path of illness. I feel bad because his life has been very difficult. It’s not fair. I wanted so much more for him. 

 

Gratitude week 20

I’ve been struggling a lot lately, so at this point having a weekly gratitude list is probably more important. I have to remind myself of the good things that are happening in my life.

The wellness nurse put me on a liquid diet over the weekend to try to calm my gut. I lost 7 lbs over the weekend. I haven’t been feeling well and I’ve been weak and tired to boot. It takes the energy of a 5k just for me to put the clothes from the washer into the dryer. Sometimes I have to take a rest after doing nothing.

This past weekend I packed up all of my running gear and put it in another room. It’s a painful reminder of what I cannot do. I haven’t cancelled the 50k I was planning on doing with my cousin late summer. Maybe, a miracle…

It’s been hard because I’ve always been a go go go person, type A all the way. I’ve really been trying to hide from the world how sick I am. It’s been pretty easy to do with this virus. I want people to remember me as strong and healthy.  I feel so discouraged because what I once was no longer is.

To make matters worse, the weather hasn’t been cooperating here in Wisconsin. We had snow flurries on Mother’s Day and record low temps this past week. Since yesterday it has been very cold with temps struggling to reach 50 degrees. It’s also been very windy and by the end of the day we are supposed to have a total of 3 inches of rainfall from the last couple days of rain. Everything is flooded. The weather guy keeps saying every week since the beginning of April that the following week will be nice but it never is. I really hope that the weather makes my gratitude list next week.

Here is my list for this week:

  1.  My daughter Angel made a surprise visit home this past weekend. She hasn’t been home in over two months. It was very comforting to have her around when I wasn’t feeling well.
  2.  My baby Arabella turned 17 this past weekend. She ended up having a nicer day than she thought she would.
  3.  Since Angel got a nice job, she decided to lease a vehicle and gave us back our old car for Arabella. Although the car is older than she is, Arabella now has a car. It was nice to see her all excited about it and take the time to vacuum and care for it. Now Arabella doesn’t have to borrow my car for school or work. I will not have to drop her off or pick her up anymore which will be less stress on me.
  4.  Today I can eat something besides bone broth. Yeah!
  5.  I talked to Paul’s friend who has colitis and got a lot of advice from him. It does feel good to know I am not alone in this despite the fact I wouldn’t wish this on anyone.
  6.  I had good appointments with the wellness nurse, counselor, and mentor this past week. I am making progress on my healing although at times it doesn’t feel like it.
  7.  Estelle found her lost Nintendo Switch. I was very worried once it went missing that it was stolen.
  8.  I got my new t-shirt in the mail.
  9.  Paul put our sailboat in the water last week. With all of the wind and rain it hasn’t been sunk, damaged, destroyed, or cast away yet.
  10.  My aunt tested negative for Covid. Yeah, it’s only pneumonia! Seriously though, my uncle has lung issues and they were around other older family members with health issues. So it is a good thing. I was worried that the coronavirus might wipe out several of my family members.

Isolating fears

I wish life was back to normal. Or perhaps I should say I wish I could take my favorite things from my old life and mix it with the best things of this new world to form some sort of utopian society.

Since this whole thing started my mom has lived in great fear. She is so terrified that I don’t think she will leave the house if it means being around other people after the safer at home order is over in two weeks. I didn’t say anything up until this point but I might have to. I figured how can it hurt her if she wants to stay at home with my dad and autistic brother.

Now she is talking about getting a mask with a filter in it to wear under her cloth mask. She found some gloves to wear. This is only if she has to leave the house. Other people have been buying groceries. I’m wondering now if locking herself away is only temporary.

She does leave the house to go on walks with my brother Matt. The other day I was on the phone with her while they were out walking. She saw some kids on the path and freaked out. They quickly walked in the opposite direction in sheer panic.

It took me back to when I was a kid. My brother heard voices that told him to attack little girls. There was a period of 3 years where my brothers and I were homeschooled because Matt was psychotic. We avoided public places. If we were out and little kids would show up, we had to quickly pack up and head out. Nothing was wrong but it would only take a second for Matt to attack someone. Thankfully he is medicated now.

My grandpa had a tree nursery next to our house. Sometimes customers would show up looking at trees. We always had to keep on the lookout. If a potential customer showed up with little girls, someone had to call grandpa and then run out to meet them before they came to our house. Someone else had to make sure that Matt did not see the children outside. We had to be hyper-vigilant and work as a team to make sure no one got hurt.

Now I see the same type of paranoia in my mom. The children are potential threats. Even if they seem healthy they could be carrying a potentially deadly virus. Even if Matt seemed fine, in a matter of seconds he could potentially hurt someone. Even if it remains unseen, the threat is very real.

I see my mom very frightened and almost in a flashback of the other time we kept in isolation. I see the parallels of the fear and isolation.

I don’t think it is good for my mom’s mental health to stay in isolation much longer. My dad is very difficult to live with and needs care along with my brother.

I think my mom is going to stay in fear and isolation for a long time, longer than it is safer at home. My husband thinks she will stay in isolation until a vaccine is developed. Like my mom is going to trust a vaccine that is put out in record time. I probably wouldn’t even trust that.

I don’t want my mom to spend the last few years of her life not living out of fear. It’s hard to see her so afraid. I’m going to have to say something if it continues much longer.

Sick as a dog

Right before everything shut down I foresaw the last window of opportunity to get things done. Paul and I had one last lunch date at the Chinese restaurant before it closed its doors maybe for good. I returned some Amazon items at the mall. I knew that once the school closed the mall would shortly follow. I got fingerprinted for my census job as soon as I could then found out later that I did it on the last day they kept fingerprinting open. It took 3 weeks later to get my background check back. Because of this I would be surprised if I start my census job much before summer ends.

One of the first things I did after everything was shut down was to buy some heartworm pills for my dog. Would it be bad to say that I took a risk for my dog? I have geriatric pets. My dog is almost 13 and my cat somewhere around 14. I try not to keep a large supply of expensive pet products because, well…

So I wandered out that day to buy heartworm pills. I saw a dog with heartworm once. It looked pretty miserable and I didn’t want the same fate for my dog. I even saw a dog with rabies once but that was so long ago.

The dog with rabies was sitting by the burning barrel. Did you have a burning barrel as a kid living out in the country? This really brings back childhood memories. We would take our garbage out to the burning barrel. This was years before recycling was even a thing. This was in the days I had trouble lighting a match. I was always afraid to light the fire.

When the burning barrel was lit we would put a grate over it so fiery pieces wouldn’t fly out and create other fires. As kids, this allowed us ample opportunity to play with fire. My mom gave us her old pots and pans. I created rock soup with dirt. It didn’t taste as good as I was expecting. Neither did grass. Sometimes we would take rotten vegetables from the garden like zucchini and cook them on the fire in a frying pan. I guess I was a child once but I don’t think children would be given the task of starting a burning barrel fire today.

That is where we found the dog with rabies. My mom drove in the driveway with all of us kids in the car. We saw the dog crouched next to the burning barrel snarling and foaming at the mouth. We were scared. I remember the fear. It was hot sitting in the car waiting for my mom to decide what to do. Something was wrong with the dog. It wasn’t our dog. We never saw it before. My mom thought we could make a run for the house to call for help.

By the time the man arrived with a gun, the dog moved a little further from the house. Mom told us to stay inside and I was big enough to peek out the bathroom window. I saw what happened to that dog.

I have seen a dog with fleas, heartworm, and even rabies in my lifetime. Yet I don’t know anyone who tested positive for coronavirus. It’s interesting to see how our experiences shape us. I had to make sure that didn’t happen to my dog, but at the same time I wasn’t too worried that something would happen to me.

The new normal

I’m doing okay with this isolation. It’s not that I don’t like isolation, I like having a choice. I was supposed to be on a beach in Florida right now.

Things are breaking down. The DVD player broke that I watch my exercise videos on since the gym closed. Thankfully my ancient laptop has a DVD player. Our main TV died. I don’t think it responded well to the surge of overuse. Or maybe it didn’t like being the bearer of bad news. Or maybe it got a virus. Oh wait, that only happens to computers.

We dug out some puzzles. After sorting the pieces of three puzzles in a row on the same day, all three were missing multiple edge pieces so I threw them out. Then Clara and I opened a brand new puzzle still in its plastic wrap and that was missing an edge piece too. We searched and searched but all I found was some dried up dog puke behind the couch. Now I remember why I hate puzzles. I had to walk away for a few days. The last remaining shred of my sanity was on the line. Seriously!!?! A brand new puzzle had 4 pieces missing.

This corona virus is the new crisis in my life right now. It’s not that bad really after the last couple months of crap going on. Being lonely and bored has been an adjustment. It’s hard to sit still and not to feel like I should be rushing around doing something. I almost feel guilty about sitting around while essential employees are working hard with people getting sick and dying.

I worry somewhat about my loved ones getting sick. I realize that my husband and most of my best friends are over 50. Having my mom, husband, and close friends all be older than me is slapping me in the face hard right now. It’s forcing me to look at death. Thankfully at this time all my friends and family are healthy.

My daughter Arabella got her old job back at the grocery store. The last couple weeks its been like the day before Thanksgiving there. They recruited her hard. They gave her a raise and put her back in the bakery packaging products and washing dishes. They told her customers would probably be rude to her. Arabella was happy about this. At Culver’s she used to run orders out to people’s cars. People treated her kindly and gave her tips whereas they chewed other employees out except for the ones with special needs. Then she started worrying that the customers thought she had special needs because they treated her differently than everyone else.

Our foreign exchange students are still here. They could stay if their host and real family still wants them to as long as school is in session. Online schooling is scheduled to start on Monday. They both realize they could be stuck here beyond the time they planned to go home. Estelle is feeling homesick and Clara was also crying about it this week. They are keeping a journal of their experiences and hopefully some day it will make for an interesting historical book.

It seems like all of our plans have been washed away. The trips we were planning are gone now. Financial security. Gone. Paul and I are working on starting a new business soon. How will that go in this economy? My structure and routine are gone. The gym is closed. I won’t even be able to see my daughter graduate from college.

I worry about death more. I even worried about what it would be like to become very sick from the virus. After running outside I felt a little wheezy from seasonal allergies. I wondered what it would be like not being able to breathe. My workouts are lackluster. Why bother? The races I might sign up for this summer might not even happen this year.

I have to hope that soon we will get through this and it will be on to the next crisis.

Enviable ignorance

This week my autistic brother Matt celebrated his birthday. He was rather upset he was not able to celebrate his birthday with family at the bowling alley like he has done every year for over a decade now.

His program he attends for autistic adults and children was also shut down. The group home he lives in closed its doors. They don’t have enough staff to cover the hours at the house where its residents were previously gone.

Matt was sent home disrupting his day to day routine just like the rest of us. This was rather disturbing for a population of people who don’t understand why the change is happening. But as they say ignorance is bliss. He is happy to be at home because he likes it there. He adjusted really fast to having my mom dote on him.

Matt wasn’t upset the day the police officers showed up at my parent’s house to talk to my dad. But that was the day the rest of our lives changed forever. You see, the police came on a Friday. That was the day Matt was scheduled to come home for the weekend and all was well for him.

Matt isn’t worried about the corona virus. He isn’t trying to stop touching his face. He is not worried that our parents who are in their 70’s might die. He just worries about whether his food will show up on the table when he is hungry just like a small child or household pet. He doesn’t have the responsibility of a family. He doesn’t even have to take care of himself.

In all honesty, sometimes I wish for that ignorance. Dementia doesn’t sound all that bad to me because who wouldn’t want to forget all of the bad things that happened to them. Maybe sometimes I just want someone to take care of me.

I wish I lived in a world where there weren’t so many things to worry about. I envy Matt’s ability to remain calm and worry free in times of great chaos and unpredictability.

There is something attractive about having a child like faith and sense of wonder in times of struggle. I want to be like a carefree child who dances and plays. I want my only worry to be about whether or not someone feeds me having the security that they will.

Yet I have been given the gift of reason. With this gift comes a great burden. Difficult decisions need to be made. It’s hard to break free from the stress and struggles that awareness brings.

I don’t want to be like Matt but sometimes I envy him.

What could’ve been

Last month someone close to me attempted suicide.

Maybe you noticed I didn’t write much during that time, maybe not. It’s been easier to write about crusty old scabbed over wounds than the ones currently tearing open my flesh. But now I’m ready to jump back into the flames of the fire that consumes me and threatens the very walls of my foundation.

Part of it I blame myself. I was where I spent most of my life, in survival mode. I was consumed by everything going on with my dad. It’s very bad and it sucked every ounce of energy, joy and peace out of my life. I thought about it every day and every night much like we are thinking about the corona virus. There is not a day that goes by we can completely purge this crisis from our minds.

I didn’t notice anything was wrong. If I did, I dismissed it as superficial (not as bad as what I was going through with my dad). When you are drowning, you tend not to notice if someone else is going too deep.

This person took a handful of pills and settled into bed for their last peaceful slumber. But it wasn’t like that, peaceful. Their life passed before their eyes taking a nightmarish turn. What have I done? Terror coursed through their veins as they struggled to purge the pills. Then they reached out for help.

When I found out, I screamed wildly with rage. I kicked the garbage can and assaulted the contents within. I wanted to put my fist through the wall, but restrained myself. For a few days after, my logic brain shut down. I forgot what day it was. I couldn’t process things in my mind that before I did with ease. My strong suit of structure shut down. I couldn’t think. I couldn’t write. Fear coursed through me day and night making it nearly impossible to sleep.

I felt angry with my dad. After what he did, I didn’t think I would ever smile again. Did this person think I was angry with them because of my reaction to my dad? I pushed everyone away. I’m so sorry I didn’t realize they needed help until it was almost too late.

I’m not going to lie, this past year has been tremendously difficult. What little joy remained within me was destroyed after the suicide attempt.

I feel like the mistakes of others are ruining my life. My childhood was ruined and is not salvageable. I tried really hard not to let the things other people do ruin my life, but it is easier said than done. If I am going to wallow in despair my whole life from the mistakes of other people, I might as well just screw up my life myself.

I can’t bear the weight of this anymore. Have it back. I don’t want it. Call me selfish, but I just want to worry about myself.

Thankfully this person realized they made a mistake to try to end their life. They are now getting the help they need. But still my mind wanders to what might have been. What would life be like if this person was not around? It would be horrible to find them dead.  Gone forever. There is much sorrow in thinking of what might’ve been. Thankfully this is not how their story ends. If nothing else, I can take comfort in that.

Garbage day

We were supposed to leave for Florida today.

Today we found out that our music trip to Europe for this summer has been cancelled as well. I was going to go on the trip with my mom and daughter Arabella.

I suppose it’s just as well because I don’t know if we can afford to go any longer anyway.

I just want to take my 2020 calendar and toss it in the fire. I wrote too many things into it in pen that will no longer happen. Every time I look at it I will be reminded of that.

With everything going on, I don’t think my daughter wants to be a foreign exchange student anymore. She was planning on staying with Estelle’s family. But Estelle and Arabella haven’t been getting along that great. The honeymoon is over and now they are like real siblings. I don’t think Estelle wants her at her house anymore anyway.

Yet we will continue on with our foreign exchange students. Although I have a new worry. What if one of their family members die at home while they are stuck here? It is stressful having four teenagers in the house and sometimes I just want to send them home.

I am feeling really bummed out by the change of plans. I’ve always lived by structure and routine. Now everything I thought was certain is uncertain.

The gym closed so today I dug out one of my old exercise videos. In the process I found out that my DVD player no longer works. Maybe it conked out in the 1990’s. Who knows? Then I got the video to work on my computer but messed up my TV. My 45 minute workout turned out double than that. In the meantime, Estelle fell asleep on her exercise mat.

Then I thought to dig out a puzzle. It seems like half the pieces are missing to make the edge. I might have to throw that out too. What a way to clean the house. If this never happened, I might still think these things worked into the next decade or two.

I’m afraid I might lose track of time. The garbage truck never came yesterday. Did I have the day wrong? How will I remember without my schedule?

Ah yes, today. Today is the day we were supposed to leave to go to Florida. It is still written in with pen on my calendar.

Getting viral

Life changed in the last 48 hours.

As if the time change, full moon, and Friday the 13th in the same week wasn’t bad enough…now we’ve got a pandemic on our hands.

Just 3 days ago, life was normal for us. My husband had plans to see the Bucks game with friends. The girls had track practice. Clara had play practice. The girls were planning on going to state. We were planning our trip to Florida in the following week. Then upon our return, we were going to Angel’s recital. We were going to visit family for Easter.

Today we were planning on going bowling for my brother Matt’s birthday. Tomorrow is a bridal shower.

Then everything changed.

It seemed strange, but the basketball game was cancelled.

Then we found out my daughter’s college is closing until after Easter. The dorm rooms are closing and everyone was sent home. The recital cancelled. Graduation? Who knows?

Angel’s boyfriend Dan works at a hospital and developed a fever a couple days ago. Should we be concerned about corona virus or is it something else?

We had our friends over last night to plan our trip to Florida. Should we even go? Disney and Universal closed.

We received word yesterday that all of the schools in Wisconsin will be closing for almost a month after Tuesday. The track meets are cancelled. The girls aren’t going to state. Will they cancel the play? What about prom?

It’s as if someone took an eraser and wiped our plans away like they were insignificant.

People are panicking. Toilet paper is flying off the shelves.

Angel came down with a fever last night. Is there even a place where we can go for testing? What should we do? Angel has been waiting for the last two hours for a call back from the doctor’s office.

My mother stopped by yesterday right before Angel got sick. The bowling birthday party is cancelled for today. I decided not to go to the bridal shower because my aunt whose future daughter-in-law it is for has some serious lung issues.

We are supposed to leave in less than a week to go to Florida. Our friends still want to go, but I am the only one that no longer does. I want to go, really I do. But is it wise? Our discussion got rather heated. Everyone is extremely emotional about this. We don’t know what to think or do.

What happens if my parents get sick while I am gone? They don’t have to worry about that. My closest brother is 3 hours away and has health issues.

What happens if we get sick on the road? What if we need to be quarantined in an unfamiliar place? What if we get stuck somewhere? What if we can’t find restaurants that are open? What if we can’t find a place that has food and toilet paper? The what if list goes on and on.

Yes, we want our foreign exchange students to see America. But is this the America we want them to see? Life seems different now. People are not at their best.

I have images in my mind of the apocalypse. Check points with people in contamination suits. We will be taking our visitors to a dystopian world. Tylenol and test kits.

Right now the allure of an adventure is gone. I think it is safer to stick with what we know even if it means being stuck at home for the next month. It’s hard because we were really looking forward to our trip.

Maybe we are already sick and don’t even know it.

 

Gratitude week 6

  1. People are still complimenting my hair. I receive the most compliments after a sweaty workout or when I have unbrushed hat hair. What!!?!
  2.  My son had a dentist appointment this week. As an adult, I passed along the reminder I received on my phone. I DID NOT tell him when to get up or where he needed to go (thinking he would know and I would be the annoying mother hen if I did so). He ended up getting lost and was going to be late. I called the dentist office as a courtesy…my son got lost and will be a few minutes late. The lady who answered was really snippy with me and said he needed to reschedule. This freaked me out because I worry a lot about my kids being late. Thankfully, when he got there about 10 minutes late they still took him for his appointment. Despite all of my worry, everything ended up turning out fine.
  3.  My daughter Angel came home from college for a visit and spent the night on Friday. I haven’t seen her since Christmas Day.
  4.  The big fight between Arabella and Estelle is over. There is relative harmony in my house right now. There was even a brief moment this weekend where all five of my kids were talking and laughing together.
  5.  I am grateful to have a husband who is following his dreams. He is taking classes this weekend and starting a new career. I am really excited for him and proud of all his accomplishments. He really motivates those around him. It’s never too late to try something new.
  6.  I was grateful to watch Arabella and Clara perform at solo and ensemble this past weekend. I love to watch my kids perform.
  7.  I felt grateful to go on a date with my husband before he left. I was able to order a pizza with goat’s cheese and afterwards ordered dairy-free ice cream. The food was unbelievably good for being vegan/dairy-free. The ice cream was some of the best I’ve ever tasted. Plus it was nice to go on a date alone with my husband. It’s been awhile.
  8.  I found a dress for my daughter’s college graduation. In a few months, my oldest will be a college graduate. I am excited for her future. She already has a job lined up and might be moving back to the area within the next year.
  9.  I am thankful to live close to the store. As I was making supper Friday night, I noticed one of the ingredients was rotten. I opened an unexpired canned good that was moldy inside. Thankfully I was able to zip to the store and back without having to eat too late.
  10.  I am thankful for my organization skills. I like to plan ahead and leave early. Although my mom and kids gave me some crap about it this weekend, things don’t always go as planned. I like to plan for that. You never know if you are going to get into an accident, hit a deer, or a random meteorite might hit the Earth (JK). The solo and ensemble event was at a school I was not familiar with. It took awhile to find a parking spot. There weren’t many signs directing us to the right sites. Then last minute, both of my daughter’s events were moved up to an earlier time. I got us there with less than 10 minutes to spare. You’re welcome! It takes a lot of organization to effectively manage a large family.