Ethan’s Journey

Today I set another boundary. I will not be bullied into doing something. I had a lady yelling at me today. She was yelling at me, pointing her finger in my face because she thought I should complete a particular task. She was capable of completing the task by making a phone call, but felt that her time was more valuable than mine, therefore I should do the task for her.  This was an adult woman carrying on like this. In what world is this behavior acceptable? Unfortunately, this behavior, in no way, motivated me to complete the task. In fact, I set the boundary that I wasn’t going to help at all. That is exactly what I did for her. NOTHING. I didn’t raise my voice to match hers. I didn’t karate chop her in the gizzard (but I thought about it). I am so sick of people acting barbaric toward one another and thinking it is acceptable. She should be ashamed and embarrassed by her display and lack of emotional intelligence. I can’t even engage with those actions. So I didn’t. This evening,

Ethan has officially withdrawn from his fall classes as well as his curriculum. He seems like a weight has been lifted off his shoulders. He is worried society will judge him for his decisions. Maybe yes, maybe no? I told him that it is part of his healing journey. I felt frustrated today. Not with Ethan’s decision. But just in general. I got an email this morning saying that Ethan has a kidney biopsy on Wednesday. What? It was scheduled today. A few weeks ago the doctor said his bloodwork looked good and cancelled it. I had to send an email to his coordinator to let her know as well as we won’t be showing up. I was frustrated with machines failures at work. Normally I can troubleshoot that stuff, this was beyond my realm especially on a Monday. When I got home, a friend left a beautiful box of Tequila Paloma’s for me. Total bright spot ❤️.  Decompressing is good. Avery and I walked the dogs around the field a few times. Animals are funny just kicking their heals up and care free.  I d

Ethan is still working on his car. He thinks he has it fixed. Time will tell. He was supposed to go to Buffalo to a car event, but it somehow fell through. I started a new cleaning project. I am cleaning/organizing our small desk nook. Some of the things in that are are piled with layers of dusk. I have completely neglected the area since Covid hit, as I was just overwhelmed and it wasn’t high on the priority list. I found notes I had written about the kids accomplishments at age 8 months and up…little stories of what they did or said. I safely packed them away after reading and giggling about them to myself. Paul was away this weekend. Avery was at work, Ethan was in the garage…. I just quietly read and chuckled at some of the stuff. It was my bright spot….I gave it to myself….ha ha. I do intend on some day having time to organize these little stories and present them to the kids in the form of a book. Some day. The dogs annoyed me today, so I punished them by making them walk extra l

 I don’t really like to do it, but I revisited some old video from Ethan’s heart transplant. Wow! He was one sick kid. He was wasted away. I was immediately brought back to sounds, smells and familiar staff voices.  I am convinced that all the machines binging and bonging have impacted my hearing in a negative way.  At the time I just saw progress, living day in and day out n the front row seat. Seeing a video, was like “wow! He was a super sick kid”. His face gaunt and just a fraction of himself.  Ethan is considering not going back to school in the fall. He thinks it will help him focus on his mental health. He is hating the curriculum and doesn’t want to be an automotive mechanic. We pushed him in that direction just because we didn’t know what to do. He tried. He doesn’t want to continue. This summer has been especially awful as his classes were completely unable to hold his focus. I fully support him with his decision. He has always been a do-er. He makes things happen for himself

 Ferguson woke up this morning ready to play, run, bark at stuff and pee on everything outside. What a tough little dude. Avery and I went on a date this afternoon, after work. We went out to dinner. Ethan has been working on getting his car back home so he can fix it. It has been at his work for a week or so. Paul is working on fixing our awning on our camper. It ripped. We aren’t really too surprised since the camper is 10 years old. That awning held up good. Our neighbor down the road has a black goat. The goat has free range of the yard and is often seen grazing near the road or being naughty and getting into the field next to it’s house and eating the crops.  This goat is often a bright spot for me. Yes, we live in the country. Today, the goat was guarding the driveway. He was laying on his knees and elbows, in the driveway, with a stinky goat face on, silently judging all the people driving by his house. It was hysterical.

Work went well. Ferguson had his dental cleaning today. Each year, he has a few more teeth removed. This year it was only one tooth. Wow! It was a big tooth though. That means that he got some good drugs. I am certain that if Ferguson was human, he would be a drug addict. He LOVES drugs. He would have lots of gold chains and throw gang signs up with his hands.  He had a “caution” and “will bite” sign on his cage because he is sometimes naughty. Today he was super good. I was supposed to work late, but another coworker (who is awesome) worked late instead. What a gift. With the bonus time, Avery and I walked around the field and then sat on the patio watching all the dogs and rabbit frolick around.  Paul joined us. He was grumpy so we started making fun of him. We finally got him laughing with us.  Ethan went to a friends house, which is good for his soul.  Not a bad Thursday at all.

Ethan and I had a chat today. It is the first time in like 2 weeks or so that we had a meaningful conversation. He shared some of the things he is talking to his psychologist about. We discovered that what I consider a coping skill of looking on the bright side, makes Ethan feel that his feelings are minimized (it could be worse). I find it comforting, he finds it frustrating and he used the example “it’s like telling a person with depression to smile…and then their depression will go away.” After we discovered this, we discussed that I can’t emotionally handle his negativity. We made an agreement that we will politely remind the other if either of these issues creeps up. Communication is key. It felt like a productive conversation, so I was happy about that. Today was spent cleaning, grocery shopping and catching up from our time away. I also gave all the pets outdoor time. Even Theo was hopping all around and eating my flowers. Avery got her hair cut for school. When she got home, sh

Today was much better. I must have slept good last night. Paul even woke me up because I was “snoring”. I am sure I don’t snore and he was just lonely and wanted to say “hi” to me in the middle of the night…..or……I was just sawing wood like the best of them…. Ethan has been in his room since I have gotten home. He has been withdrawn. I keep popping in a few times a day to check in, in case he wants to chat. Avery and I took a walk in the field with little Jiminy. Jiminy has discovered that he likes the taste of the pears on our tree. She he has been going out and eating them. Avery tried to chase him to get the pear out of his mouth. Jiminy ran under the jeep at ate the pear happily out of reach. Brilliant plan little man. Brilliant plan.

I got home from work today exhausted. I had big plans of some housework and dog walks to complete. Avery had dinner made when I walked through the door. She is such a gift. I was so hungry. We ate and watched a show. I threw the towel in shortly after that. I just feel like I need a weeks worth of sleep. Paul calls it the “vacation hangover”. A friend of mine is with her baby in the hospital. The past day has been an emotional roller coaster for her family. Always remember to be kind. You never know what someone is going through. 

Whenever something goes other than how it was planned, is an opportunity for memories. As we were winding our fun extended weekend down, a friend of ours loaded his dog in his truck. It was raining pretty steadily out. His keys were also in the truck. The dog stepped on the lock button. Recipe for disaster. Our friend was all packed up and ready to go but couldn’t get into his locked truck. Then 9 adults were circling the truck, in the rain, trying to coax the dog to step on the unlock button. We used food. We used fun, high voices, we used some of the smaller dogs to hold up near the lock to get his dog’s attention. Unfortunately that didn’t work. There she sat, stoically. After about 45 minutes, Triple A came to the rescue and quickly retrieved the keys. We will never forget the time when Marley locked the keys in the truck. The bright side? It was raining. The dog didn’t cook herself. No one had to break a window. That’s a total win. We arrived home and Paul and I felt lazy. We unpa

 Today was a gift from Mother Nature. It was absolutely perfect weather. We spent the day on the boat. We anchored it and went swimming off shore. We also played on the jet ski’s again.  I found a snake and was observing it for at least an hour. It minded it’s own business and I did the same. It was fun to watch and it almost caught a frog for breakfast. Snakes startle me, but I am not afraid of them, like I am mice. Ethan went and got his blood drawn. I emailed his doctor and she has officially has cancelled Ethan’s biopsy at the end of August. She is quite happy with his urine concentration. He is drinking well and flushing himself well. His rejection medication is a bit out of whack which screws up his white blood cells and red blood cells. He may feel a bit fatigued or shakey, but it will straighten out over the next week or two. This is a continuous rollercoaster for him. The evening was spent eating a fantastic steak dinner. After dinner it was so warm we went in the lake with th

 Today we went on my uncle’s boat. Phineas swam for hours. Not bad for 13. He is swimming himself alive forever (hopefully) with all this non-weight bearing exercise. It’s so good for his joints. He missed all of his early, mid and late morning naps as well as his early and mid-afternoon naps. He FINALLY was tired when we got off the boat. Phineas had a big job. He had to not only keep everyone safe on the boat, but he also had to keep an eye on Paul because he was on the jetski. Good ole Phineas, always protecting our family. Jiminy went on the boat too. He experienced floating in the lake with a pool noodle as well as his shark life jacket. His head weighs a lot and makes him sink, so we had to prop him up in the front. We had fun floating, swimming and chatting in the lake. My skin was warm from the glow of the sun. We had a fun campfire with lots of laughing and some over-sharing. Hilarious. We said our good nights and retired to our respective campers. Our camper was blessed with

 Today was windy. Ugh! Earlier in the day, we waded into the lake. The water felt warm. The dogs played well together.  It was so windy that our group of 9, left our camping spot and went to a place called “Swan Bay”. They had a fun Tiki bar by the pool. We sat on the second level on a private area.  As we were driving there, Paul spotted a fraternity brother driving his truck in the opposite direction. I immediately texted that brother. He went home, picked up his wife, and met us at the tiki bar. The wind was far less there. It was a comfortable afternoon with an immense amount of people watching, which was a blast. We noticed that there was one lady that had on a G-string bathing suit. If she bent over too close, her gibblits would just pop out.  The bar was really cute, there were a  perfect amount of umbrellas, and we enjoyed just chatting. Our group expanded to 11. I really liked their frozen margarita. After a fun afternoon we headed back to our camp. We stepped out of the car a

  Paul and I spent some much needed time together today. We had some good conversations and good belly laughs.  We met up with some family and friends to camp. The kids stayed home. Adults only weekend. I needed to get away from home. It’s frustrating to watch someone who has so much potential, not help themselves. Paul fell off the ladder on the dock. We all laughed at him, after we found out he was ok of course. He laughed at himself. I love these summer nights. The stars shining bright, the crickets singing…the camp fire crackling. It was fun to sit around and talk about memories we have made together in the past. Each trip is different.  Tomorrow holds the memories we will be making. This will make for some great conversation for future campfire discussions.

 Today went fairly well. Long day at work. Paul and I caught up on things around the house. Paul had some friends over. Ethan had his friend over.  The house was busy. That’s a good thing. 

Today was one of those days that every hour felt like it’s own day. I was frustrated again with Ethan today with his lack of gratitude and sense of entitlement.  I did snap at him. I told him what my thoughts were on his behavior. I left him speechless. I hope my sharp but thoughtful words echoed through his brain. They were true words. But sometimes the truth is hard to hear.  Paul, Avery and I sat outside on the patio. All of the bugs and frogs were just singing away. It’s so loud but also so peaceful. The dogs were adequately exercised and then Avery and I hung out. All in all….a pretty good day.

I worked this morning. It wasn’t for long and it was pretty straight forward. As I left the building, I looked up at the blue sky. The weather was perfect.  I didn’t sleep well last night, I had a bit of a headache. I just felt tired today. So I puttered around. Ethan was still sleeping when I got home around 10:30. It appeared that he had gotten up at some point because his door was open. He looked peaceful while sleeping. He finally woke up later and said he had felt tired. Yesterday he rode 4 wheelers and used muscles he likely hasn’t used in a while, so I can understand why he was tired. He did school work for the better part of the day. Probably trying to get his late assignments in as the semester winds down. I took Avery’s senior photos today. She looked really cute. We did a lot of different things. We used our blooming flowers as her backdrop. It was such a pretty day out. I just need to conquer the next two days and then I will get a break. I have a feeling I will sleep well.

I made progress on my basement project and then lost some steam as the day went in. I actually watched a movie. This is unheard of. So that was great! Ethan had some friends over. They stayed for a good portion of the day. Yay! He was happy. They rode their 4 wheelers until one broke. Avery went to a friends hour for the night. Paul went up to the islands and had a blast. I have to work tomorrow, so I couldn’t go. Not really a big deal because of my basement project. I was able to drop all the donations off to good will. I finished my evening off by meeting some good friends for a drink. It was nice. We talked about how we can’t wait to vacation together on Wednesday. Short work week this week, hoot hoot!

Today was my short day at work. I get to leave at 2:00! Yay for Fridays. I picked Avery up from her work. As I was driving there, my phone rang. It was collections….again…..for the third time this week. I answered it to show good faith that we are working on this. The man said they typical, “this is how much you owe….how do you want to pay”….. I explained, for the hundredth time or maybe more, that our insurance Liaison was working on this and if he noticed, there have been several insurance payments since January of 2021. He felt the need to tell me that I had to “harass” our insurance liaison so that we can get these bills resolved quicker…..or I will continue to get phone calls. I paused.  Really Sir? Really? We have been clearly dealing with this for, well we are encroaching on TWO years. YES I AM AWARE. Also, I have to repeat the same thing OVER and OVER three times a week, that is after YOU call me. I have to verify my address, date of birth, and phone number (even though you cal

 Today was a long day at work. A long day, but good day. I arrived home and was exhausted. My feet felt like they were in fire. I had a quick exchange of information with Paul. Then I was ready for for bed. Good night. 

 Ethan had his MRI this morning. The car ride was quiet. This isn’t something that he necessarily was anxious about, but he was annoyed he had to do it. He feels he has no choice. I haven’t really given him one, because we have come too far to just stop.  Over the past few days I have noticed Ethan becoming increasingly withdrawn. Last night was pretty bad. He barely said two words and stayed in his room away from the family. I know he is 19, but still….. I went in for a few minutes while the nurse asked the questions. I confirmed the kidney friendly contrast. The nurse asked if I wanted to wait with Ethan or in the waiting room. I decided to wait in the waiting room, so I wouldn’t be in the way.  After I left, Ethan said that the nurse asked him about his upcoming heart transplant in November 2022. Ethan wasn’t very comfortable after that KNOWING that they didn’t read his chart. This was even after we filled out the check in sheet with the dates of transplant on it. We just need to st

 I got the call to schedule Ethan’s annual heart catheterization. When we were visiting NYC in July, we had discussed having a specific doctor do Ethan’s annual exam. The reason for this is because this particular doctor does the heart cath through radial access or access through the wrist. He is the only doctor that does it that way. We wanted to use the wrist access because the recovery time is far less than through the leg. He would have to lay flat for 4 hours if they use his leg. When I spoke to the lady in charge of scheduling, she told me we had to schedule on a Monday or Friday. Ugh! Ok…. I asked for her to note that we needed to be the first case of the day.  She then told me that Ethan would not be the first case of the day because kids on Mondays and Fridays typically get anesthesia. That means the anesthesia team determines that all the anesthesia patients go first. Ethan’s procedure may not start until 10:30, or 1:00 or 4:00? What? And that it would interrupt our pattern o

 I woke up and decided to make it a point to make Paul laugh this morning. While he was sleeping, I left him a lovely surprise in the toilet. Not that kind of surprise. I am not a total pig. Just a partial one. When he puts the lid up to pee, he gets a nice little compliment. While at work, I got a call from the local hospital, nsaying that Ethan needs a chest X-ray before he gets his MRI of his head on Wednesday. Ugh! Really?  Now I have to rearrange my schedule and Ethan’s schedule because of THEIR poor planning. I asked why. Why did he need the x-Ray? WHY? The woman didn’t know. All I kept thinking was, at my work, we do chest x-rays on animals a lot to look for metastasis. Imagine my stomach traveling up my esophagus up and coming out my mouth. Because that was how I felt. The actual stomach! We ended the call and I had a bunch of rolling clouds in my stomach, maybe a thunder and lightening storm. It makes no sense. This kid has been imaged inside and out……and sideways. My phone ra

We arrived home and did chores. I made a Sunday family meal…big cooker today….BBQ meatloaf and rice. That’s it.  Ethan spent the day in his room, by his choice. Avery and I watched a show together. Paul did mowing. We are very exciting people. As the sweltering hot day, comes to an end….I am thankful for air conditioning. When I showered earlier, I was still sweating…..even in my cool shower. I am thankful that this weekend was so fun and we got to visit with so many people. We ate pretty well too. 

This morning, Paul and I met up with the parents of another kid that had a heart transplant one month prior to Ethan, at the same hospital. Jayne (the mom) and I have met up a few times and have often been a nice support. They just happened to be in town, normally they are a few hours away. Paul came too and we got coffee and baked goods. We sat outside, in the shade of a tall tree. We needed to hear that others shared our struggles. No one really talks about pediatric heart transplants and linking it to depression following the surgery. Everyone expects the kids to be thankful for their new heart and to thrive. But that simply isn’t the case with these kids that have such an abnormal “normal” life. Bottom line, some of the struggles these kids face are normal late teenager issues and others are effects from this life changing medical issue that will plague them forever. We just navigate the best we can.  We had our epic family picnic today. Everyone attending looks forward to this pic

  While sitting in the waiting room, for Avery’s appointment, we chose to face the tv. Little did we know that we were going to be delighted with all the information we could ever want to know about anal fissures. It was complete with diagrams and tips on how to avoid them. We learned what our daily fiber intake should be daily (hint…35 grams) and that we should practice good toilet habits. This sparked a conversation about what would be considered good vs. bad toilet habits. We were chuckling immaturely, while coming up with what we would consider “bad” toilet habits. They finally had us go into a room to wait for the doctor to discuss Avery’s pilonidal cyst. It has actually disappeared with little to no trace of it. The doctor found the likely divot that caused her entire scenario and set us up with a plan in the event it happened again. They like to refer to surgery last. We liked the doctor AND he had fun socks on. We walked pretty tall out of there because we had such good news. W

 I was able to talk to collections today to get the dates of service and amounts owed compiled in a list to submit to insurance. It isn’t our current insurance, it is the lady from the old insurance. She is our insurance liaison. That way hopefully the insurance lady will be able to facilitate the preauthorization letters and get this whole mess resolved.  We visited with family and friends  that we haven’t seen in a long time. They met Jiminy and it was good for him to be socialized. It was a win-win situation. Jiminy brings joy to all. The dogs went on a very long walk and got very tired out. Stupid Penny rolled in some sort of feces. She is not very lady like. We still love her though. We got caught in two rain storms that results in me singing to Avery “do you like pina coladas….and getting caught in the rain…?” We were soaked. It wasn’t bad though. It was so hot out, we were refreshed. We had a nice dinner and some family time around the campfire. It was a nice day. A gift.

 This morning I had to call Medicare. This is in regard to paperwork they sent me. It clearly was marked “not a bill” however, after going through all 37 pages, there were several line items we were told the maximum amount billed was ‘X’. I am fairly new to this process.  This is terrifying as the amounts are high.  Next to one of the line items it has a letter to reference below as to why each line item isn’t covered. The one item inparticular was not covered because of the “location” of services and I needed to file an appeal and get doctors to send supporting documents. Ugh! They dictate that I have to go to NYC. So I called Medicare. The first reason was to RE-add me to the persons that can discuss the bill, list. I had to be transferred a couple times for this. Ethan had to REgive permission as it apparently expired from the last time.  This is not a simple “yes I give permission for you to talk to my mom” kind of phone call. They needed Ethan’s date of birth, Medicare number, nam

 I met my friend for dinner tonight. It was a different friend than last night. For an introvert, this is a pretty busy schedule. I was looking forward to it all day. My back has been a bit sore lately. I have done more grunting and groaning than usual when I get on the floor and have to stand up, which happens frequently with my job. I gave both kids their haircuts tonight. I think I did an ok job. The good thing about a haircut, good or bad, it always grows back. We ended the evening with Jiminy snuggles. Jiminy snuggles have a mysterious stress reducing property. I can’t explain it but I am sure there is a scientific reason behind it.

My whole body is sore. Yoga just doesn’t seem to help as much as I would like. Hi hum. Avery had a delightful day of helping her boss go to a donkey farm to pick out a donkey. I enjoyed listening about it. I want to go to a donkey farm. I went out for a drink with a friend. It is nice to just talk freely without judgement. Sometimes my talking “freely” isn’t so kind. I am glad I was able to have a venting session. They are productive. Venting sessions offer a level of therapy you couldn’t pay enough for. Tomorrow I am looking forward to dinner with a great friend. Afterwards, Ethan reminded me that he needs a haircut. I will put on my barber hat and trim all his hairs. I am a mediocre hair dresser. It works for us both though. I am another day closer to the weekend. Yes! I am looking forward to it.