Ethan’s Journey

 Avery went to work with me today. She enjoys helping to revive the puppies after c-sections. We then went grocery shopping and I did some mowing. Ethan was a bit tired today. He slept the majority of the afternoon until I woke him up for his 9 pm medications. He says he feels fine. Maybe he just over did it and was worn out. Sleeping was probably the best thing for him. I also took a nap today. It was a short one though. Jiminy and I snuggled on the couch and napped. He is a great cuddle buddy. I then realized Ferguson was cuddled up with us too. It was what I imagine heaven to be like. Paul returned home from the thousand islands. It was good to have him back home.

 I worked a good portion of the day. Avery came in towards the end to help with puppy revival for the C-sections we did at work. I like having her at work. I enjoy her company.  This afternoon was spent doing adult things like laundry, poop scooping and tiring the dogs out.  I also had to prepare documents for Ethan’s fall semester and submit items to Medicaid. All totally exciting activities. Avery and I watched a show while I did some banking. Ethan joined us in between his garage projects. At the end of the evening, he and I had a good chat about school, his frustrations with one of his teachers and the antics that happen within the class. I was thankful for this chat because as Ethan was talking, he was venting. He was also smiling and laughing. I haven’t seen his smile in a long time. I am hoping that this medication increase has been helpful for him to make a little progress in now feeling as down all the time.

I woke up this morning feeling like I was 100 years old. Everything was stuff and I walked funny for the first couple minutes. I was shuffling my feet, was hunched over…..I was a walking disaster. I did 10 minutes of yoga with a YouTube instructor, and felt so much better. We could all learn more from animals. They always stretch.why am I not incorporating this into my daily routine? My therapist told me a couple years ago that I need to perfect the art of setting boundaries. It would in turn protect my sanity. Setting boundaries has always been hard for me because I don’t want to disappoint people. Today I set a boundary and stuck to it. I was so thankful to myself because of it. I knew if I did t set this boundary, I would have to deal with something I didn’t want to. I loved NOT dealing with it. I did worry that I might be considered as being “difficult”. I was proud of myself for sticking to my boundary. I remained mostly respectful when I did it too. That is a bonus. “Set boundari

 Happy birthday to me. I worked today. My co-workers made it fun. I then left work early to go to the OBGYN. I know….exciting.  I didn’t schedule it like that, the OBGYN sent me a postcard to let me know they rescheduled my appointment from a different day to…my birthday, and I was too lazy to call and reschedule.  So I just sucked it up. Luckily, things seem ship shape with my undercarriage. I left the OBGYN, only to return about 20 minutes later after realizing I left my phone there. Oops. Could have been worse. I got home and realized that I was put on warning by Facebook due to an inappropriate comment I wrote about a man that had sexually assaulted and abused a 7 year old girl for a little over 2 years. Apparently my comment “invoked violence”. I stand by my comment and do NOT take it back. It did invoke violence….toward a pedophile’s junk, to prevent him from striking again.…….I have a zero tolerance policy for pedophiles.  Paul and I went to dinner at a Mexican place. I ordered

I had a doctor’s appointment this morning bright and early. It was a wellness appointment. Turns out I am well. Yeah. I did some chores and then worked out in the yard. Sweat was running in my eyes. I was hot. I was weeding, which seems to be mostly what I am growing. I was thinking about how last year I was aching to be in the garden, but couldn’t because of dialysis. I am so glad that is over. After a few hours I came inside and immediately felt so tired. Avery and I watched the documentary on the rise and fall of Victoria Secret’s. It was quite interesting. Ethan and I talked a little bit about life in general. He bought some solar panels to put on his car when he travels so he has access to electricity. He might be going away for the weekend again. Yeah! Avery’s spot is feeling better to her. The antibiotics are kicking the snot out of the bacteria. Good. We go for a surgical consult next week in the event it doesn’t fully clear up or reoccurs which is likely. So far there are no p

Avery felt much better today and ever went to work on the farm. She is tough as nails. Ethan had his appointment today and his doctor thinks he needs to increase one of his medications. She also said the combination of age, medication and personality have all contributed to the depression he is experiencing. Ethan told me about his trip today. I valued the conversation and letting me peek into his world a little. He is planning another trip soon. I do feel that he is really trying to make an effort to be more social and appreciative of his family. Tomorrow I have quite a line up of chores. I am hoping to make a large dent in my list. I included a couple walks in the field with the dogs on my list. I was told once that “self care” should always be on your list of things to do.

 Poor Avery. We went to the doctor’s today. She was quite painful from her cyst/abscess. She didn’t work today because she was so uncomfortable. We get to the doctor’s office and they put us in this room we have never been in before. It was clear this room was used for wounds, injuries etc. The doctor came in to assess the situation. She discussed options with us and told us that it was called a pilonidal cyst. She referred us to a plastic surgeon in the event that it does not go away. In the interim, she asked Avery if she wanted the cyst drained. Brave Ave said “yes”. She really is a tough kid. She wanted some relief. The doctor had a white shirt on.  She decided it would be best to put a protective gown on because she has had these things “spray” at her before. I was so excited to watch. I know that sounds twisted, but I stick my finger up Dog’s and cats butts…..for work of course….so nothing really grossed me out (except those ropey dog drools). This doctor put on a face shield. Sh

Today we got home mid afternoon. Avery and I had a lazy day. It was welcomed. Avery has been dealing with a painful infection. Tomorrow we are going to have it dealt with and get her on something that can help with the purulent stuff coming out of it. It is swollen and very sore. She has been doing warm compresses and cool compresses. She is quite uncomfortable and she has no idea how she got this abscess. Ethan is still on his way home from from NJ. I hope he had a fun weekend.

 We had a great day today. Ethan made it to NJ and is having fun.  There was more water fun today. Actually most of the day was spent in the lake. It was hot and humid. It’s not a complaint, just a statement. We had a fantastic firework display tonight. Bursting colors dancing in the sky. How do I get paid for this life permanently?

Campfires are such a great way to bond. There is no technology. The evening noises consist of crickets, locust and the snap, crackle and pop of the fire.  Everyone is relaxed. Everyone telling jokes. The sound of laughter traveling over the lake. These are classic summer days. Today we spent in the lake. Swimming, boating, floating, jetski’s and tubing. We had fun. The sun was intense.  It’s nice when you can walk away from your day and feel the sunshine in your heart. Today was a gift.

 Ethan is preparing his car for his trip to NJ with his friends. He is going to a drift car event, his passion, and spending the weekend doing 19 year old stuff. It does take a small bit of work making sure he has all his medications and insurance cards for when he travels, just in case. I feel lucky I don’t have to worry about him drinking and driving or experimenting with drugs. He has been through months of withdrawal and it was awful enough to leave a lasting impression. He wouldn’t even use the morphine after his kidney surgery for fear he would have to go through withdrawals. He has AAA and I feel good about that. It was worth every Penny we spent. We don’t have to worry about him being stranded somewhere….plus we have been through much worse. Avery, her friend, Rachel, and I spent the day swimming in the lake and relaxing. This is a much needed break. My friend Sarah, and her family are visiting with us at the lake. Today was windy but hot, making the lake an appropriate choice

 A new day, a new attitude. Ethan was so much more pleasant to be around. I know he is trying to work on liking himself. I keep telling him that he has to love  himself. This morning was spent navigating Medicare crap. I spent 30 minutes on hold to be told that I am not an authorized person on the account. But I am. We have the paperwork Ethan signed. So now he has to call and add me as an authorized person to talk to. Nothing was accomplished on that one.  I transferred money in an app from Ethan’s 529 plan to my bank account last week. Except the money never transferred. I spent 20 minutes on hold and then got transferred to another department….on hold for another 20 minutes…..I just want to know where the money is……..finally I get to talk to an agent. The agent told me I can’t transfer money in the app……I need to use a desk top….but it allows you to go through the motions of transferring the money complete with a submit button on your phone……but will never transfer…. Seems efficient

I made a Dr.’s appointment for Ethan next week to discuss his mental health medications and explore other options. I know pills aren’t a cure. But I am reaching at straws to at least get this kid to smile a little….Find some joy in his life. Ethan said he was behind on his assignments at school. He is having trouble motivating…depression is winning against him right now. I’d like to kick depression in the balls.

Communication is a beautiful thing. Today communication blessed my life in a couple different ways. Ethan and I had a very good discussion, complete with brutal constructive criticism. It was received well in my opinion. That shows me a glimmer of maturity. Ethan is feeling quite depressed and has some issues to work on with his psychologist. Tomorrow, he is going to allow me to join his session with the psychologist. I want to accurately articulate areas of opportunity, for improvement with Ethan. I want to properly advocate to make sure Ethan is on the right treatment path. Treatment involves a recipe of strategy’s, the right people, and some medication. The frustrating thing about treatment is that it takes time. So much time. It’s hard to watch anyone suffer through this, but we are present each day and ready to change things. Fingers crossed we can help Ethan. It takes a lot of credit to be able to reflect on one’s actions. It also takes a lot to apologize for those mistakes. I am

More food prep accomplished today. I also completed other tasks and chores.  Our household feels tense. It’s not overly enjoyable. Ethan and I exchanged some words. They weren’t friendly. This kid has been non-empathetic, entitled  and has absolutely ZERO ounce of gratitude. I am trying to be patient….good night  

Many chores were accomplished today. Avery and her friend helped me shop for my big food prep day tomorrow. I was able to accomplish cleaning out the pantry and organizing. This is a big deal. Ethan had a car meet at the house, complete with burnouts in the driveway. This confirms Paul and I will likely push off our big driveway re-do project for a bit. Right now our driveway sucks. Burnouts don’t really matter. I was glad Ethan had some interaction with people his own age, with his own interests. It was nice. Ethan pretty much has declared he does not enjoy being around anyone in his family. While it is hurtful, I know it comes with the age. Compound the crap he has been through…..it makes a messy recipe. We will continue to love and support him, even though it isn’t usually reciprocated. Growing up is hard. Growing up with significant medical issues…..I have no idea. However, I am thankful for our friends sharing stories about their difficult teens. My mom had Avery and I for dinner

 I worked until early afternoon. Animals are so interesting. There are so many similarities between animals and people….except animals seem to do it better. Avery and I went to the local carnival with her friend. We are like pigs chowing down on the Italian sausage (with the onions and peppers cooked perfectly) French fries with the perfect crunch on the outside, doused in vinegar and some fried dough.  People watching was epic. The outfits. The parenting. It’s life’s reality show. We were stuck walking behind some 14 year old boys. One had his pants down under his butt with his underwear exposed. I had to really practice restraint to make sure I didn’t just pants him. I figured I would probably get arrested and go to jail. But I thought it would be funny. Ethan is preparing for his big day tomorrow. Car’s and Coffee, then he is having some people over for a mini car meet at the house. Probably will have burnouts in the driveway.  Paul is up camping and working on some things with my A

 I got the call today. Ethan has zero rejection based on his biopsy! Yay! Also, his urine is dilute which means he is drinking enough. This is great. A mental health day was what I needed. I spent it cleaning. Really…just doing mindless activities and not really thinking about to much.  I visited with a few friends today which was also what I needed. They were my bright spot.

The ride into the city was pretty uneventful this morning. I was feeling a little sick to my stomach. Ethan said he was feeling tightness in his chest and it hurt to breathe a little. Just walking in and seeing the familiar faces, walls and smelling the hospital, it is hard to believe we spent so many months here. Avery stayed behind to attend to the hotel room. She was resting up for her big drive back. After this 24 hour period I know she has gained great driving experience. I am glad that we could kill two birds with one stone. I had reserved hesitation about how things would go. I don’t know how to make the uneasy feelings stop besides declaring war against them (Hell). I know Hell is causing these feelings. So, with the advice of a great friend, I am going “to make today my bitch”, and kick Hell in the balls. It is just one day. We can forge our way through. We get bonus points if we smile and laugh. I like over achieving. My downfall is that Ethan does not like my jokes….so I mig

Today, Avery got a lot of driving experience. She did great. She drove the expressway, rural roads, in the rain, in the sun. We talked about setting a date for her drivers test. Wow! Avery and I picked Ethan up from school and started our journey to NYC. Ethan was super grumpy. He usually is for the trip there. I received a call from nephrology getting back to me regarding an itinerary for tomorrow. The more they looked into it, the more they thought it was not do-able to do both procedures in 1 day.  What? It took until less than 24 hours until the procedure to figure this out? They wanted to reschedule the beginning of August. Which means another Covid test. Another hotel room. Another 24 hours worth of food, the cost of gas for driving almost 700 miles round trip. Let’s not even begin to discuss the mental toll…..I have been mentally stressing about this for 2 weeks I can’t wven imagine what Ethan has been through……. I also have to take time off of work….I am SO upset, mad and anno

Today I had butterflies in my stomach all day. The anxiety just fluttering around. I have perfected remaining calm on the exterior.  An introvert at heart, I process internally and quietly, then I can share when I have collected my thoughts. I really don’t feel like there is any issue with Ethan and his new organs. He has been holding steady. That is exactly the time that life jumps out and surprises you with a throat punch. I am a little gun shy from this process. The greatest weapon against stress …..is choosing how you react to it. I try to react productively….but know that I have HUGE room for improvement on this one. I was in contact with NYC today. They called to remind me to hold the baby aspirin until Friday. He is still on baby aspirin due to his increased risk for clotting. They want him to clot for his biopsies. I emailed Ethan’s Covid test results from last Friday so they could upload it to his record and that won’t cause a delay. I asked what our itinerary was. I was told

Our drive home was rather uneventful. Paul had some colorful words as he was stuck behind several people out for a leisurely Sunday drive. He could make a few truckers blush. When Paul and I returned home, Avery was asleep on the couch. Ethan was out of town at a car event with some friends. I was glad for this.  Paul and I did some catch up work around the house. I logged in to see the Covid test results from when Ethan had his procedural preliminary Covid test. I am hoping they didn’t lose it. That would be our luck. Tomorrow will be better than today. Today wasn’t bad though.

Today was beautiful. The sun shines down upon us. Paul and I are camping with the dogs. I make sure the dogs had a good time. Phineas got his daily allotment of rocks. Paul and I went on a jetski excursion.  The water was fairly smooth. We rode over to Wilson Bay. We then rode up the St. Lawrence. We went to dinner in Clayton at Wood Boat Brewing. It was yummy. All and all, this is our slice of sanity away from real life.

A short day at work, and a scenic drive back up to camp. I enjoyed my time alone. I arrived in time for Mother Nature’s next work of art titled, the sunset. The pups all got a pedicure, ate their dinner and went on a walk. They also all got to sit around the fire. One by be they would vocalize far too much and get put in the camper. Then there was one, Jiminy, that was swaddled and cradled for the entire sunset. What a life. The weather was perfect, the lake was calm. It reflected how I was feeling inner peace. I just love it here.  We got to enjoy  the neighbor’s fireworks. As the moon cast a reflection over the lake, it became time for bed. I hope you have a peaceful weekend.

At lunch today I spent the entire time making phone calls and sending emails trying to get the appeals process started for the Medicare bills we received. I had to mow the regular lawn when I got home from work. I was so happy to see Ethan was almost done mowing for me. It was such a gift. I was able to accomplish many chores because of it. I developed a nasty headache after that and then decided I needed to sleep. Tomorrow is a new day.

I have been having these weird dreams lately. They are vivid. I have trouble deciphering if it really happened or not. In my dreams I can feel hot and cold, everything is in color. They seem to last a long time AND I can usually remember them. I chalk it up to stress. The girls, three dogs and a rabbit made our way home. I was able to get groceries, mow the field and get several loads of laundry done for the turn around to go back up to camp on Friday after work. I am excited to get back up there. Today has been a drain. I tried to make an appointment for Avery but after speaking with a few different people, and 20 minutes later, the podiatry office said the orthotics office had the referral, the orthotics office said the podiatry office had the referral. I was left with no appointment and had to reach out to Avery’s doctor to find out where the referral was actually sent to. I don’t have time for this. I had to schedule the Covid PCR test for Ethan for all of his biopsies next week. H

 Happy 17 th to my youngest child. She is my bright spot. Today was rainy at camp, so we went thrifting. I had so much fun watching the girls talk excitedly about their finds. Avery wanted to have dinner at the Irish pub, Coleman’s in Watertown. Our meal was delicious. Craig decided it was time to be put in a nursing home because he accidentally walked into the ladies room to go to the bathroom. I am glad we have several other trips planned to visit the islands. We really enjoy it up here. We miss Ethan. He is busy working on his degree and his car. He is doing what he needs to do.

Today was fun. We had great weather. We went on the boat. We went swimming. All the little dogs got a lake bath. Jiminy got to wear his new life vest that is a shark. He looked really cute. We rode the jetski’s. We floated on the tube and had a lot of water fun.  We had the traditional hot dog picnic for dinner, to celebrate our independence. I showed the trick to the girl’s where I say something to Paul and he can’t hear me. He says “what?”. I repeat what I said a little quieter so that he can’t really hear me. He then comes to me and I repeat myself and know for sure that he hears me. We laughed at how beautifully it works. Now Avery can use this technique as well. After dinner Paul and I took the jet ski’s out. The conditions were right and we were able to go full speed. I rode mine at about 60 and Paul got his up to 73.  The girl’s took out the paddle boat for a bit and we’re just paddling around. It was fun to watch them enjoying themselves. We had several firework displays visibl

  I slept in until 9:00. This is unheard of, but because we had a bit of a rowdy night last night, it was warranted. I woke up around 5 to take the dogs out, then went back to bed. After we got ourselves fed, properly caffeinated and fit to face the day, we decided to go out on the boat. It was a bit windy. My cousin, Andy, and Paul took out the jet ski’s. They had a blast. We slowly made our way over to the island that has a little bay out of the wind. Thankfully, Craig is an expert boat navigator and we didn’t get to wet. It was quite windy and the waves were iffy. We anchored at the little cove and Phineas immediately had to go swimming. He jumped in and swam over to a group of people. He can’t hear as good as he used to and didn’t really swim back. Paul had to redirect him towards the floating oasis sitting in chest deep water. Phineas was in his glory. He was jumping in, swimming, climbing out only to jump back in. He did some rock diving and even brought his favorite rock on to t

 It was a bit windy today, but the sun was shining down on us. The sunshine is magical. It hugs the soul. I spent a good part of the day trying to tire out ALL the dogs. We finally did it by about 8 pm. Somehow camping pumps pure caffeine through the dogs circulatory system. They stay amped all day long. Paul put the jet ski’s in and played around on them. Like a big kid. I didn’t want to ride them today. It was a little choppy and I didn’t want to get soaked. Our campfire was quite windy, but beautiful. We had some tunes cranked, inappropriate conversations and laughing, lots of laughing. The evening ended with an intense series of games of Bumper Pool. Avery shined through as the winner. Fun was had by all.

Avery, her friend Rachel, Rachel’s dog, our 4 dogs and the rabbit all left today to travel to the islands. I was towing 2 jet-ski’s. It was a shit show but we made it. It was actually far less chaotic than expected. We made it in time to see a beautiful sunset. That was my big bright spot. I so much enjoy Mother Nature’s gifts.