Ethan’s Journey

 Happy Halloween. Avery had fun at school today. She did the senior parade and was dressed up as one of her game characters.  Jiminy had on his pumpkin sweatshirt. He was chilly this morning and it only seemed fitting. Nana has knee surgery tomorrow, so I am going to help by driving them to the hospital. I am so glad I am in a more flexible position to be able to help. Halloween is more fun when your kids are small. Except….I still “tested the candy to make sure it wasn’t poison.” I have always been dedicated to candy safety. I feel if you sample often, you will be able to tell if something is poison. Ha!

 We had dinner at Nana and Papa’s . Ethan chose not to go. We were all bummed. He made his choice. Paul thought we should “make” him go. I mean that is a hard call. If he were away at college we wouldn’t do that. Also, as he transitions into adulthood, he should be able to make his own choices. Pick your battles wisely.  Was it the right thing to do? Who knows. I wish he liked us more and wanted to be around us. Oddly enough, he spent a small amount of time with Paul, Avery and I this morning as we congregated on the couch in the living room. We had mindless conversation with sarcastic comments that were said with the hopes of making someone laugh. I like those moments. It was like 10 minutes of normal. This was my gift today. Paul and I spent time out in the yard trying to prep for winter as well as get rid of all the leaves. I thought about the past couple of years and how I wasn’t able to do the work I did today.  Prepping for a move in 2020 and dialysis in 2021 were both time consu

 What a pretty day today was. Everyone was exercised. Paul and I did some outside work. My work was more productive as Paul accidentally cut a tree down and it fell the wrong way onto our barn. It left some dents, but no one died.  Paul had a string of words come out of his mouth that were not favorable. But again, no one was injured. We went out to dinner at a Chinese place in the city. The food was delicious. Avery was so tired. She worked all day and went out to dinner. She has to work in the morning again. Her season is winding down. She did say she was looking forward to a day to herself with nothing to do. All in all, this late October sunshine is good for the soul.

 I had my costume meeting today. It turned out pretty good. Several people dressed up and had great costumes. I put a bee costume on Jiminy. I don’t think he really cared for it. At first he gave me a pouty stink eye. I told him how cute he was. But he then decided he was going to ignore me and not make eye contact. I then was laughing at him and he got defeated. He gave up his protest.  I told him he was one of the cutest bee puppies there ever was. Together, we were a bee and a flower. You can’t have one without the other. Jim got bored during the meeting and fell asleep during the meeting in his bed costume.  After work, I took Avery and her friend to pick out stuff for their Halloween costumes for the senior Halloween parade on Monday. We had fun. Avery had her spirit week dress up today for either a soccer mom, OR a grilling dad. She chose a grilling dad. This was her interpretation: All in all….it was a fun day. 

He called! Woo hoo! He called and spoke to the doctor. He was respectful and they seemed to have a decent conversation. He does NOT want the flu and Covid vaccines. They said that was ok, as long as he knew that it was against the recommendation. They said, he can chose not to have those vaccines because he is in control of what happens to his body.  I was thankful He talked to the doctor. This was such a win. They also discussed about how they want to change his rejection medication and how it will involve a lot of blood draws. He agreed to it. However, I know this will come with a lot of complaining. I am ok with that. I will politely listen. It’s for the sake of his kidney. I finished up my costume for tomorrows meeting. I am excited to see everyone else’s costumes. I have a busy day tomorrow on the phone.

My big dilemma today was trying to figure out how I am going to make “petals” stand up on a headband. I have to show up to my virtual meeting on Friday in costume. I thought that was a fun way to bond with new co-workers. I have decided to be a flower. I will wear a headband with petals. Jiminy is going to be in a bee costume.  As far as I know, Ethan didn’t make the call today. He told me he wasn’t going to this morning, because he was working all day. I then saw in my calendar that he has a “wellness” exam at the pediatrician’s office on Friday. I am going to cancel it. We made it a year ago. He has had so many sets of eyes and so much bloodwork….I am certain he will be ok. I am also certain if I tell him about the appointment he will get VERY agitated. It is not worth the fight. I will save the fight for bigger appointments. A few friends stopped by for a quick visit this afternoon, which was nice to visit with them.  Another bright spot today was that I got to work outside for the

 Ethan’s cardiologist wanted to talk to him and follow up with him after his appointment that got cut short due to his desire to just get out of NYC last week. I gave Ethan the number to call. He refused. I tried begging, convincing more begging…I tried more convincing later….and still I was met with anger and refusal. Defeated, I just accepted that he wasn’t going to call. I know they wanted to discuss a medication change, that will require Ethan to get frequent blood draws for the first several weeks. Ugh! Now what? He won’t make a phone call. How can I convince him to agree to the medication change without completely alienating him? Later this evening, he texted me to ask the name of the lady he is supposed to ask for. I told him. He then texted me that he wasn’t able to get through. It was after hours. So hopefully he tries again tomorrow. Sigh. The weather was excellent today. This tree from our front yard is confused. It doesn’t know what color it wants to be.

I caught my coworker drinking out of the toilet today….TWICE. My other coworker wouldn’t stop licking me. I moved my office outside thinking my coworkers would enjoy that. They didn’t help me work at all. One fell asleep.  I really enjoyed the ambiance of work today. It was interesting, as in all my years, I have never sat outside my house, during the week. It was quiet. No traffic, no lawn mowers…all that I could hear was occasional birds, and the leaves falling to their tragic death, one by one. I personally think the leaves are being a bit dramatic. However, when I die, I might be just as dramatic and change color first before dramatically falling to my death. A friend stopped by and we walked in the field. It was very good sunshine therapy. Avery got home from school and started working on her homework. Ethan came home from work, didn’t say a word to anyone and shut himself in his room. Tomorrow I have to tell him that he needs to call NYC and speak with his doctor. We will see how

 Today was quite productive. Much yard work was accomplished. Dogs and rabbit were exercised, laundry was washed, the house was dusted, bathrooms cleaned…typical Sunday catch up. Paul spent the day splitting woods, then winterizing the camper. He then took his car to Letchworth State Park and  enjoyed the fall colors. He and his buddy drove their sporty little cars. Paul got pulled over by a nice cop. The cop gave him a warning. Ethan washed his car today. This evening he went out to hang out with a friend. That is all I know. He is on my emergency contacts so if he needs to he can reach me 24/7 and my phone will ring. Just in case….

 I had a fun day. My brother and his wife came to visit. We went to Blodgett farms to see Avery (she works there). She told us that she had an injurry earlier in the day, and showed me her finger all covered in tape. She had cut her finger earlier with shears, to where it was spurting blood. Geez! She still had dried blood on the side of her face. We will unwrap and assess in the morning.  We went and grabbed donuts and then visited on our patio. The weather was so nice. The dogs and rabbit had an abundance of outdoor time today. We went out to dinner, which was fun. Then we headed to a Halloween Costume party  it was fun. Paul was an outlet. I was a plug. The outlet was supposed to be on the front of the shirt. However, I wanted to surprise Paul and put it on the back of his shirt. There were a lot of jokes and of course he was a good sport.

 Zero rejection. Great news! I had a migraine this morning. Probably stress. It turned into a nagging headache for the rest of the day. Avery went into school early to be part of a televised pep rally. She was with the other members of her club, Sources of Strength. This peer based club helps spread awareness about suicide. It helps to lower the stigma on mental health issues. She made her TV debut. Autographs start at $50. We are waiting for the movie deals to come rolling in.

We had our SSI revue today. Ethan had to make the call. He acted like I was forcing him eat a poop sandwich. I had all the info that was needed and coached him ahead of time. Once he got on the phone, he was pleasant and did well.   I got the call today from NYC. We don’t have biopsy results yet, but Ethan’s bloodwork is looking ok. He does have some abnormalities in his cbc (but that’s not new). He has a low white blood cell count. It’s not the worst bloodwork. The doctors are happy with where things stand otherwise. I did mention today about Ethan’s anger towards his family. I told them about the things happening within the household. We discussed how things were being perceived and said at home. We came up with a tentative plan for Ethan to talk directly to the doctor without me present. This is fine by me. The doctor wants Ethan to switch medications because it is easier on the kidneys. It involves blood draws a few times a week. Ethan completely turned it down and said NO! The doc

Ethan said this morning “My creatinine is going to be high. I already know it. How do they expect me to stay hydrated while traveling?” This has been a common argument he has had. I responded with “ You chose not to drink in the car yesterday. YOU made that choice. I stopped a couple times to pee. I have to drink or I don’t feel well. You could have had as much to drink as you wanted to.” I want him to realize that he is in control. He likes to blame and not take responsibility. It is never his fault. I don’t think he has a valid argument at all. He was quiet after that. It gets exhausting hearing the same immature argument every time. I want him to point the finger at himself. I do think he has hindered himself in many ways. I always say to him “No one can help you, if you don’t help yourself”. I always maintained Ethan was a pain in my ass. This is still true to this day. As much as I complain about it, I am glad he is still here. City life is NOT for me. There are so many unfavorabl

Ethan and I started our trek to New York City. We took an unconventional route thanks to Google Maps. I thought the route may be more scenic. BEST. DECISION.EVER! It was so beautiful, I felt like I was a small drop of paint within a masterpiece. Just driving along with vibrant reds, yellows oranges and greens. The rolling hills displaying it’s artwork proudly. Poor Ethan had to survive me saying “look at how beautiful it is” and “WOW!” We made it to our hotel. We got some Chinese food. Ethan’s mood today was quiet. We barely spoke in the car.  He will likely feel better after everything is all over with tomorrow. Our ride across the bridge arrives bright and early.

Today was a very Mondayish Monday. My body is so sore from being so active over the weekend. Avery and I went to the store to grab a few things, one being the shirt I need for Paul’s Halloween costume. We got to the annual party this Saturday. My restless leg got the best of me this evening. So I am just going to go to bed and hope it stops.

We accomplished a lot this weekend (mostly today). Today was get stuff done around the house day. It was moving and organizing and cleaning day. Multiple areas around the house were affected. I went up and down the stairs so many times that my legs are tired (or I am significantly out of shape…or both). Plus I walked the dogs multiple times around the field.  Paul cut some trees down like a lumberjack. He stacked wood, mowed the lawn and did outside man stuff….probably peed on things to mark his territory. Then we went to watch the Bills game at a friends house. I don’t really care about football. I like the socializing and eating portion of football….and the beer.

 Avery and I went to Bristol Mountain Ski Resort and rode on the ski lift to see the beautiful colors of fall. The view looked like a painting with it’s glowing oranges, reds and yellows.  We rode to the top. It was quiet and peaceful. At the top we saw a wedding being set up. Wow! We waited in line a little over an hour to get back down. It was a bit chilly but we survived. We were laughing at the conversations going on around us. There was a group of ladies living it up. They were making us laugh. We were sure they had a flask with them. We met up with friends for dinner for some yummy Chinese food. Our food and company were both delicious. Paul spent the afternoon at the grass drags with his buddy. He said he was a little sad that Ethan wants nothing to do with him. He saw his friends with their kids, and he really wished Ethan could have gone with him. Ethan stayed behind and worked in the garage. He was in a snarky mood, so I didn’t talk to him much. I hope some day these two can

I was able to visit with some friends that I hold close to my heart. There was a lot of laughing and story telling. But mostly laughing.  Avery and Paul came too. We had yummy food and beverage. But it was the company that was so much fun. Today I tried working and watching a show. I had a few meetings but mostly I was able to watch all 7 episodes of a new show that came out. I have never been able to do that. I can see tv becoming my work buddy. I let Theo out. He was out for several hours. The fed ex guy showed up and rang the doorbell. I went to the door and the guy was just standing there. “Hi Mam.” He said. “Hi” I said, kind of confused because they usually dump the package and leave. “Um….there is a wild rabbit out here” he said “He’s not wild, he is our pet.” “Oh……pause…..we’ll he is outside.” He pointed to Theo that was like a piece of meatloaf on a sidewalk. “Ok, thanks….bye.” I said. It’s like he has never seen a rabbit that close. It did make me chuckle. 

Ethan was listening to music while he worked in the garage. I opened the door to let the dogs inside and heard Ethan singing away. This is a kid that in the 7th grade had to take either band or chorus. He chose chorus because it “seemed easier”. He never really has been into music that much from the aspect of “making “ it. At one of his concerts he put in minimal effort to move his lips and admitted he wasn’t singing at all. He said he was moving his lips because that is all he had to do to get the grade. He was right. He moved his lips and got the grade. But this singing…..it was just blind singing out of enjoyment of the music. I listened for longer than I should have. I am getting the hang of my job. It keeps me busy for sure. Today I had the help of Ferguson on my lap. 

 Working 8 hours a day seems very strange to me. I skip lunch, and am done between 2-3…depending on when I start. I am not as physically exhausted as I used to be. Today after I finished, Avery and I spent time together. We are watching another show, which we have struggled to do for quite some time. I feel like I have time back. Ethan and Paul had to work together to move a desk, so that was good. It’s the little things right?

Today, my office was lovely. While I was working, I did some enrichment with the dogs. This involves tossing cheerio’s in the yard and they have to use their sniffers to find them. They love it. It keeps them engaged for quite some time. I was working on my computer, peeking up over the top of it. Theo was out too. He was eating my flowers again. I have finally advanced to phone screens. Yay! While I was doing phone screens, I had this little dude just napping away. He prefers to nap with company. He also likes to snore and interrupt me talking with his cute squeaks he makes while repositioning. Bliss. Over the weekend, Ethan accidentally broke the glass in one of our windows. I told him that he had to discuss it with Paul, but I was glad he didn’t get hurt. This evening, Paul and Ethan were able to navigate through this without screaming at one another and being totally pissed off. This is a huge win. I was proud of them both. Ethan was asked to get a replacement, so we will see how t

 More coordinating for Ethan’s appointment next week. I emailed the doctor regarding Ethan’s dose of rejection medication. She got back to me and requested that Ethan get his blood drawn this weekend. I do know she is a very busy woman with lots of kids to keep track of. I asked her if it was something that could wait a few extra days until next Wednesday. I told her he likely would have other labs done and I would prefer him to just get one poke. Luckily, he is allowed to wait. Phew! I am getting the hang of the work from home thing. I am developing a routine and being kind to myself, scheduling appropriate time to check emails, source etc. each week I learn a bit more and am able to be more valuable to the team. To be a good boss, partner, friend, etc….you just need to show appreciation for said person’s contributions. A valued person, is loyal and yields above the standard capabilities. Once someone feels undervalued…..it turns into a shit show and can go down hill quickly. So far o

 We camped over the weekend and had terrible service at best. Camping was fun. Everyone got an ample amount of exercise.  I love that Avery still enjoys camping with Paul and I. She pretends she is an only child. We dote on her and she helps us a lot by cooking breakfast. Yum! Today we watched the Bills game. The entire campground was watching the Bills game. There were only one or two stealers fans. I felt sorry for them. I could give a crap who wins. I hang out for the food and cheer for whomever my friends cheer for. It was so fun to hear the Bills make a touchdown and the cheers throughout the entire campground were CRAZY! It was like a wave that spread. There was whooping, hooting, cheering and just plain noises of celebration. The dogs and the rabbit also had fun. They enjoyed fresh air but also being warm in the camper. Phineas and Jiminy are the master smugglers in the cold. Avery and I arrived home at around 7 pm. As anticipated, the phone reception at the campground was awful

I scheduled the stupid Covid test that is needed for Ethan’s procedure. I understand why he has it done. To keep the hospital staff and other patients safe. It’s really not that bad of a test. It’s just one more uncomfortable thing on the list. I do have to give the hospital props for working with us on not doing the leg access for Ethan’s biopsy. It seems like there would be a lot of stuff going on around the groin. I have like three inappropriate jokes I could insert here, but I am trying to be on my best behavior today. I was asked to go to NYC in November for a veterinary conference. I declined. I just don’t want to go in the middle of the month and then the first week in November. They told me that they would put my name in a hat for the next conference. They also said it may be in Florida. Woah! I would much rather enjoy florida that NYC. We will see where this crazy adventure takes me. I never in a million years saw this position as a possibility.

I got to do some cool things at my new job today. I am learning the technology. I started meeting the practice managers of my territory. I am meeting so cool new people. Two thumbs up. Today was so pretty out, I moved my office outside onto our screened in porch. I was able to enjoy the sounds of nature while working.  We do have a neighbor that lets their dog bark excessively.  I had flashback to the Friends episode when Ross was yelling “PIVOT” and then Chandler yelled “SHUT UP, SHUT UP, SHUT UP!” I wanted to yell that, but I didn’t. It isn’t the dog’s fault. We all sort of scattered after work. Paul did boy things like mow the lawn. I did “me” things like entertained the dogs and cleaned. Ethan worked in the garage after he got home from work. Avery has Homecoming this week and went to the food truck rodeo. It sounded too people-y for me. I do have to be careful about who I am exposed to until Ethan’s appointment in NYC. There is so much planning that goes on to coordinate that I do

I got a call this evening from Ethan’s hematologist. She said she had reviewed Ethan’s bloodwork and has started conversations with the nephrologist and the cardiologist team to change Ethan’s anticoagulation medication. Currently he is on asprin therapy. I immediately had vomit in my throat.  It is like an anxiety cloud swarmed around me. I felt tense. Ugh! The last time this happened, Ethan was switched to the daily injections that were painful and required a ton of monitoring. Apparently she heard my concern in my voice. I always try to be kind and patient. The fact she detected my fear will be helpful to know, and for me to work on. As she was talking, I pulled up Ethan’s latest cbc to see if maybe I missed a terrible number or something. His numbers, while still low, are far better than they were. She then explained it is because of Ethan’s low Protien S level. That damn Protien S.  When you have too little   protein S , it's harder for your body to control the coagulation pat

I know of two people that very recently suffered from their loved one taking their own life. Both people that passed were parents of minors. I am so saddened by this. Part of me feels angry towards these people. How could they do this to their family and especially their children? Part of me feels they were selfish. Then the other part of me realizes that it was the result of an illness. The part of me that realizes that suicide is the result of an illness feels horrible. These are people that thought the only way to stop feeling so incredibly sad, worthless etc….was death. Imagine being so ill that when you see your kids faces, you still choose death….because the pain of living is so bad. I had a general blah day with the terrible news. Luckily I was able to get out in the sun, with the dogs and clear my head. I was done working at 3:00. It was wonderful.  When you look around to the people that surround you with love, be thankful that you have them with you. Someone out there is miss

I bought a bunch of tomato’s today from a local farm stand. Gotta support the small businesses. I put them in my ninja and blended them all up. I then put them in ice cube trays and am going to freeze them, so when I make chili, I have fresh tomatoes to use instead of canned (too much sodium). I also felt how much work 4 dogs and a rabbit are. Our pear tree is my nemesis right now. I have to go out and pick up all the pears, then let the dogs out.  Today I had all the dogs outside as well as Theo (the rabbit). He stays close to the house and just eats happily. Sometimes I forget I let him out. Then I have to go find him. I say “Theo….where’d you go.” He usually pops out of my flowers. I gave everyone baths (except the rabbit), washed all the bedding and cleaned all the cages. Phew. Our house smells fresh. Avery worked all day. Good for her. I remember how hard those days were when I would go to school all week and work all weekend.  Ethan and I went to a different local store and bough

 Ethan is a weird kid. He worked all day in the garage on various projects. Then he parked his chair at the end of the driveway for at least an hour. Our town hosts Apple Fest every year, complete with a car show. He chose not to enter. But all the cars were driving but and revving their engines for Ethan. He loved it. Everyone got fresh air today. Avery left the house at just a little before 9:30 and got home more towards 7:00 pm. She worked hard, outside. All the dogs and even the rabbit were out today. I was able to declutter a lot of stuff around the house. It sounds weird but I like to “putter” on weekends. Do a little of this and that. It was the perfect day for puttering. Tomorrow I might exercise my ability to “make my own schedule”  and do a little bit of work…so I can cut a day short during the week. I really like the flexibility of making my own schedule. It’s was a good day.