Ethan’s Journey

Ethan spent a lot of time working on his car today. Paul is struggling because he can see Ethan doing things that  Paul wouldn’t necessarily do, trying to fix it. Paul knows of a different way that Ethan could try. Ethan doesn’t want to hear anything from Paul and that leaves Paul completely frustrated. It’s easy for me to say “just ignore it” but I know it’s not that easy. We will continue juggling the ups and downs. So far 19 has been the hardest age to “parent”.

Friend therapy is the best. I had a relaxing day finally, puttering around to get things checked off my “to do” list. One thing on my list was to pick Paul up from work. He called me around 5:30 and asked me if I had forgotten. Of course I had forgotten. I felt like a jerk. I went and picked him up but it put him home a bit later than he wanted. At least he wasn’t mad about it. I spoke with one of the doctors at Columbia today. Apparently we were supposed to get special lab work done when we went on June 15 th. I didn’t get the lab request because it came under a nonspecific email, and I totally looked over it. I am hoping that we can just wait until July 13 th to have it done. I find out tomorrow. Another good day 😊.

I heard back from our insurance liaison. Our account has been put on hold again. Payments were sent but lost. Seems convenient.  She is helping navigate the collections accounts. Hopefully that will be put on hold as well.  I am currently trying to connect to a financial planner at the hospital to navigate the Medicare nightmare and help me figure out what it means to file some grievances. I am so thankful I am not working tomorrow. I am looking forward to time with one of my bestie’s. I haven’t seen her in so long. ❤️

What is the deal with Medicare? I feel so stupid trying to navigate the 37 page SUMMARY. Summary…AKA   the short version I would hate to see that LONG version of this.  The newest claim is we owe a few thousand dollars for services that I was under the impression we’re covered. I think I am officially traumatized by these bills, the collections agency harassing me weekly to biweekly and the hospital calling for my balance due. When is this going to stop? I don’t see an end in sight. I reached out to my transplant team for guidance on what to do from here. It looks like I need more supporting documents along with filing two different appeals cases. I am so frustrated. Then to top it off I got 4 bills from the hospital almost totaling $10,000. I know I don’t owe that, but it gets very frustrating working my butt off, Paul working his butt off and then get slapped in the face with these bills. I just feel like I am walking up a muddy mountain with slippery shoes on being chased by a kille

 Today was hotter than satan’s armpit. We really couldn’t do much outside due to the humid, HOT weather. Paul and I decided it was the perfect day to launch the jet ski’s to see how they worked. Paul had done some work on them and was anxious to see if they ran smooth. We did about a 30 mile ride. It took about an hour and a half. We launched at Braddock’s Bay Marina and drove down to Irondequoit Bay, went under the big bridge and came back. We then ate lunch at a little bar on Braddock’s Bay. The food was delicious. Ethan made it home around 2:00 today. He slept in his car, as planned, last night. He wasn’t in much of a talking mood but I think he had fun. I was tired from our ride so I took a nap. When I woke up, Ethan was napping. It was that kind of a day. We ended up going to a friends house in the evening. It was great friend therapy. All in all, it was a great day.

Today much was accomplished. When we finished visited with Brian and Kristen, then the work began in the yard. I haven’t had the drive to tackle it, but today I had the drive and went with it. I was like a plow horse, just kept going. Avery had a pool party to go to. She was quite excited. I was excited for her to start her summer before senior year with a pool party with her friends. The weather was perfect for it. When we got home, Ethan shared that he was going to go to Erie Speedway for a drift event. It is in Pennsylvania. He was taking the Supra and driving it with his friend who was driving her own car and picking up more people in their cars in Buffalo. I am so happy he is going out and about. I am glad he had the opportunity to do so and he chose to do it. He was not sure if he was coming home tonight or tomorrow. He took his Saturday night and Sunday morning pills just in case he spends the night somewhere. I think back to when I was 19 and I moved to Georgia with Paul, so a

Today was good. I think I did ok staying positive. A friend made my day today and shared a “new to me” sparkling water flavor called “Strawberry Margarita”. It didn’t have tequila in it, but man, that tasted good. Now I am going to have to buy up all the stores stock to make sure I have it year round.❤️ This afternoon Avery, Paul and myself went to Buffalo to visit my brother and his wife. Ethan stayed home on dog duty. We had pizza on the back deck and then had a campfire. We had some good chatting and visiting around the fire. I appreciate Brian and Kristen living so close. For a long time, they lived far away, so this is a blessing. It was fun chatting about how we grew up and how it was different from Kristen and Paul’s upbringing. I think Avery enjoyed it too. Avery almost didn’t come, but I am glad she did.

 Day one of being less of a negative Nancy. I did pretty good I think. I held my tongue several times. I didn’t have a perfect score by any means, but I was happy with my efforts. The kids and I went on a walk around the field with Jiminy. Ethan was not happy about the fact that Paul spoke in the phone with someone Ethan strongly dislikes. I told Ethan to stay neutral. My bright spot today was lunch. I had good lunch company.  The four of us chatted awy.

Today I spent the day with Avery. Just her and I. I loved it. I was telling her that I was feeling defeated, down and just generally negative lately. I don’t even want to be around myself. Ugh! I just want to say “shut up! Shut up! Shut up!” I can often feel my face gravitating toward something resembling what I imagine looks like me smelling something awful, the majority of the time. Maybe even in my sleep. That awful stench is my stinky attitude. I also received this message from a good friend today as I was feeling down. It was well timed and gave me the boost of exactly the kick in the pants I needed. I have decided to actively remove my head from my butt and be thankful for what I have. I am going to make more of an effort to be more positive, so I might actually enjoy my own thoughts. I am also looking forward to my upcoming vacation, where I can just get away from life for a moment, reset, and carry on. I set some small goals for myself to actively work on. We will see how that

 Today was ok. Work is getting super boring. I don’t use my brain enough so it has been a struggle. Each day feels like a year.  I like to solve problems, stay busy, have projects and just doing more than mundane tasks.  At lunch I went home from work and had a tense conversation with Ethan. I went back to work not feeling great about the conversation, but I knew it needed to happen. After work, Paul called and said he had company coming over for a campfire. We quick threw out the swing pads and boom, we had a nice campfire. I took the dogs for a walk in the field. At one point I saw a deer. We stared at each other. It was an intense stare. I appreciated the beauty of their long legs and gauging how old it was. It then sprang away into the tall grass. I enjoy those peaceful moments. The temperature was perfect for a campfire. The best thing about a campfire is listening to the conversation. We share lots of laughs, we saw lightening bugs and Jiminy fell asleep at the campfire. He was t

The highlight of my day today was eating lunch with Avery and taking her and the dogs for a walk. She understands my humor and tried to trump it with her own. It makes our conversations silly and hilarious.  Ethan worked all day today. He was excited to make money, because he is anxious to get to the next step of working on his drift car. It’s good for him to get out of the house too.  Ethan has decided that he doesn’t want to join us on our family trip this year. I am sad that he won’t, but completely understand his decision. He is capable of staying home and plugging away at college, work and trying to squeeze in friend time. He’s at the age that he doesn’t want to be around his parents. That’s ok. Part of the decision is because he doesn’t want to be around Paul. Part of the decision was made because the week after, we got to NYC for several things. He will miss some classes over it. He doesn’t want to miss anymore school than he has to. Paul is so upset that Ethan doesn’t even want

We made it through Father’s Day. I think Paul’s Father’s Day was ok. I made him breakfast. Avery and I tried to buffer the blow that Ethan really isn’t communicating with him. It hurts Paul’s feelings. Both Paul and Ethan are guilty for this deteriorating relationship. It’s hard to be the middle person. I can see both sides. I can see the flaws of each. They both come to me to vent, and I hear both sides. I try to stay as neutral as possible. I feel like I shouldn’t have to play the middle man as both Paul and Ethan are in counseling. I get irritated over some of their repetitive arguments. Their counselors are trained to advise for these situations. I am not perfect, so I undoubtedly screw up with my wording, opinion or actions. It’s up to them to bring these things up at therapy to try to work on fixing them.  Avery wrote a cute message in Paul’s card. She likes to tease Paul, but he also teases back. Avery got in some good driving practice today. Happy Father’s Day to all.

There is a lot of tension in our house. Paul tried to help Ethan with his car. Ethan didn’t ask for help and got mad that Paul remove the broken part and started to fix it. Paul’s intension was good. Ethan has repeatedly asked Paul not to “TOUCH” his car. Paul is beside himself trying to hold on to what little relationship they have right now. Sometimes he over steps and it causes conflict. It makes tomorrow a hard day for both of them. It isn’t always Paul’s fault for arguments and disagreements. Sometimes it makes it hard to be around the house. They mostly just ignore one another. They avoid being on the same floor of the house at the same time. I know that if Paul just stops “trying” and “helping” and when Ethan moves out, then things will heal between them. That is NOT happening anytime soon. Ethan thinks Paul is just stupid and Ethan doesn’t like Paul telling him what to do.  Tomorrow is Father’s Day. We have a picnic we are attending. I am looking forward to it. We will see if t

Today was Avery’s first day of summer break. She payed around and celebrated her hard work from a long and grueling year.  She helped me pick out Father’s Day gifts after work today.  We accidentally stopped at Goodwill. We love walking through and picking up someone else’s junk and making it our treasure. We have found some unique pieces for our house as well as wardrobe.  Sometimes I pick out hideous things for Avery…. We try to find the most hideous outfits and imagine the person who used to own them. We took the dogs for a walk. It was a t good day.

Avery has finished her junior year…officially and will be a senior in the fall. I look forward to watching her have fun over the next year.  I barely saw Ethan today. He had school in the morning and when I got home from work, he was in his room with the door closed. I left the house for a bit in the evening and he was in the shower when I got home. Regardless, today was a decent day. It started with friend therapy. I spoke to a friend before work, as well as on the short commute to work. I ended the day with a great chat and margaritas from a different friend. She has kids about 10 years younger than mine. These kids offered such an innocent perspective of life. I tried to convince them that my dog had human hands as suggested by a photo I have of her. They didn’t believe me, but I did make a convincing case, and I think I left them guessing. Kids can be so silly but then turn around and have such thoughtful things to say. It is so fun watching them connect the dots and make their own

Today was glorious. I needed a few moments to myself. I had time to think while I mowed. I don’t mind mowing. It combines sunshine therapy, with fresh air and then the peacefulness of the steady purring of the blades. Setting boundaries. That was the thought topic of today. Setting boundaries is hard for me but very necessary. As well age, I find I just don’t care that much about stupid stuff. I don’t have time to waste on it. I have a kid that has been through so much trauma physically and emotionally and continues to ride the rollercoaster of emotions. Ethan is clinically depressed. He does the best he can. Some days are good. Some days are bad. He has to retake two classes from his spring semester. He was bummed about this. However, I view it as that he passed his most important classes, while getting a kidney transplant and dealing with the aftermath of his heart transplant. What an accomplishment.  Seeing Ethan when he is really down hurts. It hurts my guts. It hurts to breath. Th

After work today, I picked up Avery and headed to get groceries. We did some shopping, came home and unloaded the groceries. We had the 4 dogs helping, and with their help, lost one bag of chips due to Phineas being naughty. Ethan was in the house while we unloaded. He didn’t say thank you for the groceries, he didn’t help out the groceries away, and he grumped about the things he wanted but didn’t get. I immediately became enraged. I quietly stewed as I grew more and more aware of the crappy situation. I mulled the situation over and tried to think of the best way to let Ethan know he was pissing me off, with effective communication. “I was mad because I went grocery shopping after work and you immediately complained about when I didn’t get. You weren’t grateful for the things you did get.” Turns out, Ethan was in a bad place mentally. He was just overwhelmingly ugh, the constant yo-yo. He told me that he wished he never woke up. Those are hard words to hear. Especially when I have ha

I was feeling out of sorts all day today. I had so much fun over the weekend and then had to be an adult again. Ugh! Two different collections calls today. I asked the lady if there was a way she could just copy and paste what I told her last week. She became rude very quickly. She told me she was taking my number off the account etc.  needless to say, I did NOT appreciate her. However, Vince was lovely. He was polite, and I recognize his voice at this point. He was kind and helpful.  Paul asked me if I wanted to sit outside with him and have a drink tonight. I was mentally just not feeling myself, and didn’t want to….at all. I wanted to climb into bed and not talk to anyone. But nonetheless, I agreed. As we sat outside, he listened to my complaints. He validated them. Avery came out and joined us. The conversation moved away from the thousand reasons why my day sucked, and went into other things. We even started laughing. Then, Ethan joined us on the patio. He joined the conversation.

There is no better feeling than seeing old friends. Seeing old friends, visiting the nostalgia of your memories together. I got to do just that. I attended an alumni event at SUNY Canton.  It is a small campus, with a perpetual smell of cow manure. That seems gross, but somehow it is a calming and nostalgic aromatherapy. We call it “fresh Canton air”. We seem to age, but the general vibe at SUNY Canton is the same as when we were 18 and 19 years old. It feels like no time has passed. People just become friends in the magical land of Canton. As more alumni events happen, we meet more and more people that participated in Canton’s Greek presence. That is how I spent the weekend, with people I haven’t seen in years, people whom have supported our family along the way, and we never really got to properly thank them. People that you can pick up with, even if you haven’t seen them in 10 years. It is such a cool bond for us all. I left Friday morning. I was the driver and start point of the ad

I am excited for this weekend. There is a group of us (minus a few 😢) that are going up to our College for Alumni weekend. I haven’t seen many of them since 2019 or maybe even before. I am looking forward to laughing and having fun. Today Avery sent me a screenshot of a letter she received from the Rochester section of the Chemical Society saying she is receiving an award for being in the top 10% of Chemistry students in a 6 county area. WOW! This is my bright spot. This one may glow on for a while as my bright spot. This confirms she has all the “elements” to be a success. Her basic classes days “argon”. She keeps her “ion” the prize. Yes. I think I am funny. I am still a member of the pediatric heart transplant group. There was a mom today that has an 11 year old son on ECMO. I reached out to her to offer hope and invite her to vent, share her worries and be a support.  Today as I was monitoring a patient under anesthesia, I kept having flashbacks from when Ethan was in the hospital

I spent the morning completing phone calls and emailing paperwork. This felt especially good because having all that looming over me made me feel anxious.  Sometimes I just need these days off to not talk to anyone, regroup, and situate my thoughts. I can get into a grove and keep going. I do stop and take the dogs out frequently because that is my therapy.   I was able to visit with a friend and take a nostalgic walk. That was my bright spot. Then as I was leaving I realized I had tracked in dried mud all over their floor. Not cool. 😢

 Today Ethan had a neurology appointment. We are in phase one of converting some of his care over to Rochester Doctors.  Ethan was super negative about everything we talked about in the car. Health care, politics, his progress, college, everything. I was growing tired of pointing out all the bright spots within his negative statement. He was sucking my soul down to the depths of hell. I became short with him and was annoyed. We arrived at the appointment and at that point I had stopped talking, as a coping skill to deal with his negativity.  The doctor quickly came in. She did a series of tests on him. She could tell his tacro was unregulated STILL because of his excessive tremors. Other than that, he is doing well. We discussed his seizure medication. It has a side effect of grumpiness, depression and fatigue. Ethan has to be on it another 2 years before even considering taking him off. I expressed my concerns of him having another seizure while trying to wean him off. In about two ye

Today was the Monday-eat Monday. Ugh!  We got home and went to the High School for the awards ceremony for all the kids grades 9-12. Avery did quite well. She is a smarty pants junior, almost senior. She won the Academic Excellence award, Notre Dame Club of Rochester, Junior of the Year Award for leadership and excellence, and the Innovation and Creativity Award, from RIT awarding her $8000 per year, renewable for 4 years….wow! Ethan started his summer semester. He went to work and then sat in lectures for 4 hours….ugh! So glad those days are over.

 When I got home I asked the kids what they had done all weekend. Avery had worked on Saturday and volunteered to clean up the school grounds with some people in her club at school. Ethan spent half the day yesterday at Cars and Coffee, put on by The Little Speed Shop. He also did more work on his car.  Today he worked on his car, then went to a friends house. He needs his friends more than ever to carry him through.  Tomorrow is the start of Ethan’s summer semester. He has a 5 semester major. He was bummed that he didn’t have any classes on campus to meet new people. He will have this in the fall, so that’s good. Paul and I got home from camping and caught up in our weekend chores. I was distracted from my chores because I had so many damn bug bites that are itchy. I even used bug spray with deet and they still enjoyed several meals of my delicious blood.  The sun was welcomed today. Such a pretty day.

My friend, Carrie, and I explored the CCC/POW camp that is near Hamlin Beach State Park on Moscow Road, Hamlin, NY. It was a camp that opened in August 1935 and was instated by the Roosevelt administration to financially help those affected by the depression. They took young, strong men from needy families. These men could enlist for the CCC, if picked, they would get $1.00/ day, $25 per week sent to their families as well and room and board. In return, they were taught valuable skills.  Sometime around 1944 this camp was modified and became a place that housed German prisoners of war. We used a ghost hunting app called “GhostTube” to try to communicate with then (spirits) that uses your phones built in magnometer to detect fluctuations in magnetic and electro-magnetic energy. It takes the “energy” and converts it into words. Sound hokey? Absolutely. I was trying to think of ways for it to be a hoax. Does it track your location and cater you experience to that? Nope. There isn’t even a

There is nothing better than taking you crew of 4, for a walk in the camping loops to tire the 4 dogs out. The dogs went on several walks around the loop. The dogs were ready for bed when we were finished with them. We had a great campfire with friends. We laughed and laughed. We enjoyed a nice version of “Rock Lobster”. We chatted about addressing school shootings, recalling funny memories. Paul did an excellent job backing the camper in. I was proud of him. All in all, it was a great day.

 The picture is just because Jiminy is so cute. We got Ethan’s results back today. His tacro level (rejection medication) is high. It is frustrating because it keeps yo-yoing between low and high. We are making micro doses to his medications and it seems that these small changes make his level go from low and unprotected to dangerously high. We can’t seem to find the sweet spot. Because his tacro is high, it has elevated his kidney values. So no matter how much Ethan drinks, he can’t seem to lower it with his fluid intake. We continue to monitor every other week because he isn’t regulated. I am looking forward to this weekend and seeing our friends. It will be much needed friend therapy. Next week we have a trip to the neurologist. The appointments are slowing down, so that is a bright side.

I mowed 75 % of the walking trail in the field. The constant humming from the mower must lull me into a meditative state. I was thinking about my life this year compared to my life last year. I was thinking about how I wasn’t even back to work yet because I was juggling appointments, dialysis and Ethan’s mental health. We were not able to leave him alone due to his seizures. It really minimizes life’s annoyances in the present day.  I am thankful that we don’t have as many appointments. I am certainly thankful to have those 20 hours a week back and that I don’t have to do dialysis.  Ethan did have to go to the lab today. We are still waiting on his tacro level to see if we have to adjust his dose of medication. I spoke to many different people today trying to collect the proper documentation for vocational rehabilitation. Say that 3 times fast.  I am going to bed early because I just feel worn out. Hoping an extra hour of sleep might help. Wish me luck.