Ethan’s Journey

I decided to go thrifting today. I didn’t have anything particular I was looking for. I saw some pretty ugly things. One item I felt should not have been donated. It was so ugly it should have gone right in the trash. It was a dress. I can’t even imagine who would wear this out in public. Maybe Bob Cratchit’s wife would wear it as a nightgown? But it was marketed as a dress. I scored three pair of jeans, one still had the tags on. With tax and me rounding up to the nearest dollar, my total was $17.00. Nice. Avery and Kendall came over. Avery had to drop off tax documents. We decided to go get Ramen to celebrate Kendall’s birthday (which was in October). I ordered bubble tea. I don’t care for it. It has little balls of tapioca in the bottom and feel like gelatinous fish eggs in your mouth. They don’t really have a taste. They are just round and mushy. I am not used to a drink with stuff that can get sucked up into a straw.  The dinner was good. The company was fun. We came home and ...

I sent this picture to Ethan today. I sent it in a text message with a sentence: “Jiminy wants you to blow off the rest of the day at work and have you come home a little early to snuggle with him.”  It warmed up today. I let our fire go out this afternoon. Ethan was out in the garage working. He hasn’t done that in a few months. That made me happy. For dinner I made a 16 bean soup with ham. I ate a small bowl to make sure it wasn’t going to bother my stomach. It was delicious. I puttered this evening. Did some chores. Paul went out riding with the guys. He suspects it is the last weekend to ride.  I have some tasks to finish up in the morning. Then I may venture out into the public like an actual human being. We will see how I feel in the morning. This evening Jiminy and I snuggled on the heating pad. I was totally enjoying it. He is just so easy to love. I asked Ethan if I could sleep with Jiminy tonight. Normally, Jiminy sleeps with Ethan. They have a cute little night time...

 Avery has a girl that has befriended her in one of her classes. It was not by Avery’s choice or consent. This girl continues to wait for Avery after class and chat her ear off. Avery was telling me about it and I apologized to her for “the curse”. I also have “the curse”. The curse is that random people find comfort in your company quickly and over share many details. It happens out in public all the time. But I never want to be rude and either try to politely leave or end the conversation. Avery sent me a 30 second snippet of the girl talking AT Avery in one continuous run on sentence of nonsense. This poor girl just had diarrhea of the mouth and Avery has become the diaper. I started suggesting helpful ways for Avery to exit the conversation. My go-to was having active diarrhea. I told Avery to drive the conversation in a way that would make the girl perceive Avery as “weird” and want to avoid her.  We started brainstorming topics and this is what we came up with: Thoughts ...

 As I sat downstairs for my morning coffee, I listened to all of the noises Paul makes in the morning. Sooooooo many noises. I swear a noise came out of every orfice of his body. It’s almost as if he has a daily competition of how loud he can be. Excessive throat clearing, coughing, sneezing and trouser coughs. Grunting, loud breathing and sighing. Wow! He has a large audio footprint. I like to call it wedded bliss. Ladies, this loud beast is all mine.  After work Avery came home and I drove her and Ethan to meet Nana and Papa, Paul and Auntie for dinner. We went to the Cheesecake Factory. Their menu is so long!  We ate dinner and a few of us ordered cheesecake to go. I didn’t order any cheesecake. My stomach is still a little wonky from traveling and just wasn’t craving the sugar like I normally do. Lame, I know/ Avery told me a little more about her summer research project. It is a LLE -Laboratory Laser Energetics. She is going to be working on trying to figure out a wa...

 I have never really had a desire to visit Mexico. The dirty diarrhea causing water is the biggest turn off. My idea of a vacation does not include loose stools. But I do feel so bad for tourists and innocent citizens that are dealing with all the aftermath of the take down of the cartel leader. I have been watching the videos and I can’t imagine how scary it must be. The fire place today was so toasty. I was very thankful for the fireplace keeping myself and my sleepy co-workers warm. Ethan and I watched a show together this evening. It is a feel god show with good cops and gun fire. To make it exciting. I really enjoy those moments with Ethan. I will miss these moments when he moves out, even though he will be 10 paces to the south. Ha!

Ethan got home from work annd I reminded him that he had an eye doctor anppointment. He was irritated because he had forgotten about this appointment. He was tired and he didn’t want to go.   In an effort to slowly get Ethan more independent with appointments, this appointment was easy for him to go by himself. Most of his appointments I will probably go to with him. He has some complex things going on and a second set of ears helps.  I did email over a list of his medications as requested as well as made sure his insurance was all set. I wanted it to go smooth for him while he is by himself. There is no need for me to be at an appointment like this. There isn’t anything too concerning or changes Ethan is noticing. He said the appointment went well. Great! Avery and I did our exercise call. She has officially secured her summer time research project at U of R. Yay! I am not sure what she will be doing, other than “research”. This program was difficult to get into, so she ...

  I left Virginia this morning. I was frustrated with this conference. There was very little traffic and the days were long. The bright side was I met a fellow co-worker and she was really nice. I hope we work together again someday. The Roanoke airport was a breeze. No line at TSA. Through in less than 3 minutes. I logged in to try and catch up on some work. I have nothing better to do and my hospitals need people yesterday. Some guy was coughing his brains out. It set me off. I relocated to a different and less contaminated area with little people. Doesn’t this guy gravitate into my area. Packed up again.  I don’t like him showering me with his illness. It wasn’t a heart disease or asthma/COPD cough. It was a wet, I am sick cough with sneezing, sniffling and cascading germs all over every surface kind of cough. He also was coughing into his hand….then touching things. I need a bubble ASAP! I started to panic that I would be sitting next to this guy on my flight. What are my ...

 I survived today. We got through it. My coworker had a 7 hour drive home, so I sent her early.  She was delightful and will look forward to chatting with her. I would totally work with her again. I spent some time outside and enjoyed the 65 degree weather. I took a little walk and then retired to my room and tried to catch up on my work.  I turned on HLN to listen to real crimes and walked through the cases. I totally judged the “murderers” and their terrible mistakes. Why are you leaving latex gloves behind so they can be swabbed for DNA and Finger prints? Stupid! Total rookie mistake. I was picking away at emails and catching up looking at résumé’s. I decided it was time for dinner. I went down to the bar to place my order to go.  I rode the elevator down and walked toward the bar. It seemed as if  everyone who was staying in the hotel was at the bar. Nope! It was VERY people-y. I did a U-turn and went right back to my room to order room service. I needed to ...

 Paul called and wondered if I had any back up boxes of wine. With my previous “emergency wine” purchases, we were able to avoid a wine crisis….all done from a different state. #wifewin I slept terrible again last night. It is stormy in Virginia and I had a low level headache all night. The kind Tylenol doesn’t touch.  I believe it was a mix of bad sleep Wednesday night, traveling and weather/ allergic headache. This conference is SSSSSLLLLLLLOOOOOOOWWWWWWW!! There isn’t much traffic. However, the bright side is that I have gotten some interesting feedback to share with my leadership team. I also have been asking questions to my recruiter partner and learning a few things. I see value in that.  Today was in the mid 60’s. I was only outside for a brief time, but it felt good.  I am tired and have one more day to survive. Hope I can sleep tonight.

  Flying is always an experience. I had a relaxing middle of the day flight. I was through security in 6 minutes.  I had forgotten that I was not on a direct flight. I went to the gate and was like…why is this plane going to Washington DC. Whatever! I figured it out. As long as I know the plan and where to be, I was not going to get lost in the details. I remembered the important stuff, like what to pack and when to arrive at the airport. The flight attendant had a bit of an attitude, but it was warranted. 3 people were talking on their phones during the safety announcement. He stopped the announcement 4 times to ask them to stop. “you can finish that call from the terminal if you don’t end your call now.” Just follow the rules people! My nose is over active. The first plane was a mix of halitosis, oily skin, and dirty laundry. Not farts! That’s good, but the smell was still unpleasant. My face was also unpleasant as it was twisted up in mild disgust. The first flight was turb...

 I had a series of frustrating work events that led me to wonder if I was being secretly filmed. The absurdity of conversations I had were a bit unbelievable. I had one guy in tears on a video call. It wasn’t due to anything I said. It just happened. I was not emotionally ready to talk him through it. We got through it.  Ethan got home from work today and wondered if I could do a hair cut on him. He quickly changed his mind and said he would wait until Sunday. He then paused and asked me when I was going to get home on Sunday.  “I should be home by 4 pm.” I said “ Let’s do the haircut today, because you will probably be tired on Sunday.” He said soooo thoughtfully. We settled on today because he is right. I will likely be tired and cranky. He doesn’t want cranky Mom with a weapon near his face. Good plan! This kid has only gotten his hair cut by a barber once. Every other haircut I have given him. I channel my previous years of dog grooming, and apply it. If you have seen...

 Ethan and I got into a conversation about geothermal heating and cooling. He expressed interest in this and learning more about it. With the little I know about it, I explained that it was A system of pipes that circulate a water antifreeze mixture Deep underground in the winter, it extract heat from the Earth to warm the building in in the summer it reverses the process, transferring heat from the building back into the Earth.  I only know this because Paul and I had a conversation about it a few weeks ago and I had zero understanding and did a small bit of reading. It is supposed to save energy costs.  I told Ethan to start researching grants to cover the cost of this and I would help him apply. Writing isn’t his strong suit (mine either but between the two of us it might be ok). He also expressed interest in solar panels on his roof. He is not pleased with all of the stuff going on with high energy bills in the area. He grumped about it being a monopoly. He told me th...

I got a call today from the Transplant center (cardiac). It was Ethan’s NP. We really like her. She and Ethan’s doctor were chatting about him and she shared how Ethan’s kidney values took a huge nose dive when they switched his cholesterol medication. She shared with him how we weren’t surprised and how Ethan has such wonky reactions to things. She reiterated how Ethan just doesn’t follow the medical rules. After some brainstorming, Ethan’s doctor wants Ethan to get more genetic testing done. Specifically to look at his FLNC variant.  I am not really a whiz with genetic testing, but this variant can give them more information on his genetics to help them guide Ethan’s care for the future as well as be able to help give them more information. He had this testing done 6 years ago. At that time it was determined that he was an anomaly and that his heart issues were not passed along through family genetics. In the past 6 years they have made advancements that help give the doctors inf...

 It’s that time of year. I am feeling cooped up and want to travel. Only a month until our Bahamas trip and I am ready! We watched the Daytona 500 this afternoon. I use that term lightly. I was working while the race was on and enjoyed watching the crash replays. I did enjoy listening to Paul and Ethan discussing the race. I looked for my nephew but didn’t see him. He works for RFK racing. Afterward, the news came on because we were too lazy to change it. We never have the news on because, frankly, it is a mess out there and ignorance is bliss. The lady that was presenting the news was good at rapid firing information as us. She was doing it well. She had it just rolling off her tongue in such a natural way. “Do you think that lady has had Botox?” Ethan asked. I looked up from my computer and the reporter had on a blindingly neon pink shirt. Her eyes were huge like she was surprised, but that was just her face. Her eyes were huge! She couldn’t move her eyebrows. “Oh my gosh, I thin...

 Paul was off snowmobiling today and I had the day to myself. I had a good chat with Mom and then was off to clean and meal prep.  After that was completed, all 4 pups got their spa day. Baths and warm up by the fire while they dried. I like them to dry and not be cold. I remember how much Moe used to fight me on baths. Now he is a perfect gentleman.  He does wear an annoyed face while in the bath. I can live with that. I even was able to brush all of them afterward to get the loose hair out. I am not sure what I would do with my time without dogs. Ha! I know I give them tubby time more than most dogs get. I just don’t want the gamey dander smell in the house.  Everyone got fresh beds maid including me! I love a nice fresh bed with good smelling linens. Ethan rode the snowmobile around the field for a while. It is fun to see him having fun and doing normal things. I consider it exercise for him because it can feel like a workout trying to stear those things. Ethan an...

 I was doing some light Friday evening about colorectal cancer, (isn’t this normal?) and got to the part where they started talking about symptoms. I wanted to update my knowledge due to the recent passing of James Vander Beek. I started reading through the symptoms and instead of using the word “gas” they used the word “trapped wind”. Who is writing this article? Trapped wind? I have never called it that nor have I ever heard anyone else call it that.  Guess who is making a point to say the phrase “trapped wind” from now on.  When the wind becomes untrapped….what is the phrase for that? My brain was tired today. I really had to motivate to finish up the work day. I had a quiet evening coming up with a trip for a few gal friends. Oddly, this is relaxing. I was trying to figure out a budget, find a place to stay on the beach. I want to be able to present a budget and then come up with travel dates for 2027. The whole time I tried to feel the sun warming my skin. I was tryi...

 I volunteered to moderate the chat in a Virtual event tonight. Traditionally, we have these events on Teams, but tonight we used Zoom as the platform. My role was to answer questions, drop in an email address here and there and keep an eye on things. I answered all the questions as they came. 3/4 of the way through, the other moderator shared that my answers were only going to him and the host. Ugh! Rookie move! I thought of the old Ex-Lax commercial “smooth move, Ex-Lax!” Oh well! I made up for it with my winning personality.

 After work, Paul set up for he and our friends to snowmobile to a restaurant and I could drive and meet them. I thought that was nice to be included. I don’t mind that I can’t snowmobile. It used to bother me that my back limited me. I have accepted it now. There were six of us that chatted and hung out. We had some dinner and then afterward, they continued to ride and I went home. I was happy with that.  It was nice because it wasn’t too crowded. The people that were there weren’t excessively coughing into their hand and then touching things or being gross. Perfect! I love it like that. It was a wonderful time. Laughs shared. I had forgotten my purse. I realized it when I got into the parking lot. My key to my van was in there. I had done remote start and wondered if I would need to call Ethan to bring me my purse to get home. Turns out, I had a key in my pocket. Crisis averted! Paul was the sugar daddy tonight! He paid for everything…..from our joint account. Ha!

 I briefly shared with Ethan how his insurance was discontinued but it is now back. I gave him the mini version of the hoops I jumped through last week. He doesn’t need all of that on his plate as well as his medical issues. He was relieved that it had been resolved. He did thank me for dealing with it too. After work, I had a deep tissue massage scheduled. I scheduled it because I just feel so tight all over. Even after stretching and yoga, I still feel tight. She asked me what areas felt tight. “Only the areas between my head…..to my toes.” I said. Deep tissue massages can be a little uncomfortable. It was exactly that. Uncomfortable at times, but not dreadful. I left and felt exhausted.  I came home, ate dinner and headed to bed around 7:30. I am identifying as an old lady this evening.

I got the call today that Ethan was switched from the Essentials plan to straighten county Medicaid. This will be so helpful for him. He may need to be re-evaluated again but right now we can pick up his medications. I have 3 refills waiting for Ethan to pick up. It is also nice to have an awesome pharmacy. Our pharmacy is so kind to us. They have everything ready and are always available for suggestions. We feel like they care. If they don’t care, they do a super job of hiding it! As far as how much of a pain this Medicaid situation has been, I have learned a lot of useful information I can share with others. I am thankful for that. I had a long and busy day. Friends kept me entertained though with funny texts. I got a play by play of jury duty and I felt like I was right there. I could almost smell the one guys bad leftovers heating up in the microwave. People are unbelievable. I worked a little late to squeeze in one last phone call. I am hoping my efforts pair this person with thei...

 Paul and I had our morning coffee together. I totally enjoy annoying him. “Paul, what do you think Lo Mein noodles are made out of?” I was asking because I didn’t know and wondered if it would be an egg and flour base like pasta.  “It’s made of Lo Mein.” He said. “Thanks. Thanks for that useless I formation.” I said.  Just another Sunday conversation. He laughed at me response. He annoys me as much as I annoy him and I mostly enjoy it. By the way, Lo Mein just means noodles mixed together, it is not the ingredients of the noodles Paul! Our conversation naturally led into what we were doing today. “I am going to get groceries and stop at the liquor store and get TWO boxes of wine so we don’t run into an emergent situation like last night where you have to drink bottled wine.” Paul was forced to drink wine out of a bottle last night and commented that he thought bottled wine is stronger than boxed wine.  “It was not an emergency.” He said. That was his today argument....

 I worked with my old friends today. We had fun. It was nice catching up. One lady and I have a special relationship where we shoot each other the bird as much as possible. It is done in a fun way. I look forward to it as does she. I got to look at, touch, help lots of pets today and I enjoyed that. There was a Chihuahua I got to work with. My favorite! I did regret saying yes to this when I was walking to my car this morning. Brrrrr! The regret was brief and passed. I took a quick nap with Jiminy when I got home. I think it was from all that people-ing that I did.  Off to donate blood, and then Ethan decided he wanted Chinese food take out for his birthday dinner. It is very salty so he rarely eats it.  He LOVES the cheese wontons. He got his meal and he ate it happily. I order the Kung Pao chicken. I like it for the spice. It was a tad bit spicier than usual and it made my nose run. I mentioned multiple times it was spicey. I even had to blow my nose a few times. Paul w...

 My stress level went from threat level midnight (very bad) to baseline. I am not sure there is much difference but it feels better. I was able to make contact with the Medicaid office. I spoke to this wonderful woman that listened patiently regarding Ethan’s medical issues and directed me on what options were available. We are going to go through a renewal process and get him back into Medicaid. I verified it is retroactive and we can purchase his medications, and get refunded once the application is renewed.  Apparently we were sent a renewal form (lost in the mail). I did not see it and figure it is lost in the mail somewhere. I feel so much better. Then the calls started coming in. Our gal at the heart failure center had our back. One lady made a call to the pharmacy to get things situated for Ethan’s medications.  Another lady called me and said that the renewal form the First Lady told me about would delay Ethan’s care by weeks.  Lady number 2 did it with me on...

 Sarah gifted me a fabulous coat for Jiminy. When he puts it on he becomes a PIMP/Drug dealer. He becomes a misfit of society. We were laughing as we talked for him different things maybe a pimp or drug dealer would say…but in a tiny little Jiminy voice. I needed a laugh today because I received a letter yesterday saying that Ethan’s Medicaid has been discontinued. Of course the social services office is only open 9 am -2 pm. Those are better than bankers hours. To be fair, I am sure they work longer hours but they turn off the phones to do so.  I had to scramble to rearrange some of my calls today to allot for the holding I anticipated doing. I didn’t have the heart to tell Ethan about the letter yesterday on his birthday. Of course, his coverage ended 1/31/26 and he just had an echo and annual cardiac appointment. We have to get it situated quickly so that he can not have a lapse in his medications.  The pharmacy said we can pay out of pocket, but we are not independent...

 Happy Birthday Ethan! This morning I set my alarm for 5 am so that I could wake up and make cinnamon rolls for Ethan for breakfast. My alarm went off. I was dreaming and totally heard it but incorporated it into my dream. Paul had to wake me up to shut it off. I usually don’t sleep that hard. I made the cinnamon rolls and put a dollop of frosting on them. I served them to Ethan and teased him that I made him “boobs” for breakfast. Ethan is so modest, that he does not find my humor that funny. He is far more mature than I am. He is a tough audience to make laugh. Occasionally I pull it off and it is a sweet reward! Ethan made a passing comment. “Remember last year at this time we sat in urgent care all night”. He said. Last year we did in fact sit at urgent care for about 4 hours. Ethan had a nasty pneumonia and needed x-rays and a couple antibiotics as well as a steroid.  “Yay! No Urgent Care on your Birthday….1 year in a row.” We both laughed. It gets so ridiculous that all ...

 Ethan and I went to the cardiology office. He went in to have his echo done and I waited in the waiting room. I chose a chair off to the side away from everyone. Apparently I had an invisible sign above my head that said “Please sit as close to me as possible”. All the chairs within a few minutes were full around me.  I was planning my exit to the other, vacant side of the room. The guy next to me coughed and then told his wife his stomach hurt. He then started burping. His wife was sniffling like she had to blow her nose. It was like nails on a chalkboard. I never used to be like this pre transplant. I gathered up my things and as non-rudely as I could to get the hell out of the germ cloud that had been brought my way. I can’t have Ethan breathing that sick and burpy air. Ethan came out and shared that they gave him image enhancer for his echo. It is a solution that causes micro bubbles and allows them to see his heart a little clearer.as they gave him the solution, a collec...

 I was giggling about a text message Ethan sent me today. I shared it with a few friends that I knew would find it funny too. He had me cracking up like a 7 th grade boy. Today was a smooth Monday. I ran some errands after work. I made sure to gas up my car since it was so warm out. Tomorrow I will drive across town for Ethan’s appointment so I needed to add some fuel. I did my exercising tonight even though Avery and I weren’t on a call. I texted her what I did and she will do the same when she gets around to it. I decided to go to bed early again. I had a head ache and just wanted to be in the dark.  Sleeping makes me happy so I don’t mind.

 Well today was leaving day. Because I. We did have fun. Paul and I were chatting about how different each of our friends are but how we have come to accept and celebrate one another. We appreciate they have done this with us as well. Especially when I bring the nervous dog that growls. On our drive home we saw a bald eagle on the side of the road. It started to fly away as we approached. It was ginormous and such a cool thing to see. We got home and found a woman in our driveway with part of her car off the driveway. Ethan was helping her try and shovel out her car. Paul had a few choice words to say before he got out of the car to go help her. Ethan and Paul proceeded to help this woman, who was dropping off a package FOR US, (doing her job) and gets stuck because our driveway isn’t as plowed as it should be. They were able to secure her car and get her out of the driveway. One of our neighbors even brought down his tractor because he saw what was going on. Yay for neighbors! Eth...