Ethan’s Journey

 I had an insurance issue with Avery’s coverage last fall. Of course I do. So after several phone calls and some digging, I found that there was a mistake on my employers end. I am due a refund. Yay! It was worth the 4 phone calls and couple emails that were sent. I had a headache the majority of the day. It wasn’t terrible, more so nagging. I blame the weather. Jiminy and I decided to take a nap to see if that helped. It did help me…I think Jiminy liked it too. He is a professional napper. He might try out for the napping Olympics. He’s a strong gold contender. Tonight was another fantastic night of Bingo. I picked Avery up and we met a friend there. This time we were smarter and arrived 30 minutes early. We stood in a line to get our boards for about 20 minutes. There was a nice mixture of people there tonight. It was a less aggressive crowd than last time. There were no words exchanged or almost fights. I was surprised at the seriousness of some of the Bingo goers. One lady had her

I woke up early and went straight to work. 4:30 am. Luckily it was in my livingroom. I needed to fill my schedule for the rest of the week. After Friday, I won’t be interviewing for a week. My plan is to send as many candidates to the clinics as I can so they at least have people they are working with while I am gone. I tried to turn on the new Elisabeth Moss show, the Veil, but I can’t access it until tomorrow. I really like her and her expressions. She can be so beautiful, but bad ass, but also so pissy. I packed up Paul’s carry on with snacks. This was to satisfy my own anxiety. Paul satisfied his own anxiety by purchasing a huge mound of mulch. He wants to put a bunch of mulch down before we leave. I went to the eye doctor today. I have a slight blurriness. I notice it most when watching tv. We just switched insurances. I was certain that we had vision insurance, but the lady said no. I told her that I wasn’t sure why she couldn’t find it, but that I would go home and find my paper

 The weather was enjoyable today. It rained, but also there were times of not raining. The not raining portions of the day were so nice. We had a decent breeze, the temperature was nice and everyone was mostly outdoors today. I ran errands, found bargains and made a run to the liquor store to get Paul some wine. I picked up a new canned margarita to try. Ethan’s friend was over for a while today. I made some hotdogs on the grill for everyone. The first zwiegel’s of the season. I liked today. It was the first Sunday in a while that wasn’t structured. I just drifted through the day quietly.

My shift started at 6:00 am at the emergency. I don’t really mind getting up early. I had my coffee and then was out the door. We had lots of interesting cases and I liked the crew I was with. I haven’t worked with the day crew. They were fun people. I liked the doctor I worked with. He is fun and  I like to give him a hard time. When your co-workers are enjoyable, it makes it more of a pleasant social experience.  Of course I stayed later than anticipated but didn’t really mind. I didn’t have a lot going on at home for today. This evening the 4 of us drove to Oswego for dinner. We met up with Ethan’s favorite ICU nurse and got to meet her daughter. I think back and this woman worked SO MANY hours for Ethan.  Her shift was 7 am -7pm and she often wouldn’t leave until 9 or 10 pm and come back the next morning. 4 days in a row. She pampered Ethan, cheered him on, had his medicine down to a science and made things happen (like getting him outside). She was a tremendous support to me as we

 Ethan had his therapy appointment today. He shared an incident that happened between he and Paul. I was so happy that he is opening up. I encouraged him to talk about it because he voiced that it was “annoying”. He and the therapist talked about it. They also decided mutually to meet once a month until Ethan starts his apprenticeship. Then they will likely change the cadence to once a week to work through any exhaustion he may feet, or feeling overwhelmed or stressed. He has been given a medication he can take when his stomach is in knots to help settle his mind. Luckily he has only taken it once or twice. We are still trying to collect paperwork that Ethan needs for his apprenticeship. The lady Ethan has been working with called him and she went over somethings. He ended up needing to send a follow up email. Ethan has been glued to his phone today. There are some pretty significant weather events, tornados, and he is just beside himself with excitement, wishing we got crazy weather l

Just another day. I was swamped at work trying to catch up from yesterday and wrap things up before our trip.  Ethan has shown real growth doing things around the house and being helpful. I so much appreciate that. It has been a long road. Paul is hanging out with his bowling pals the next few days doing boy things. He did share that he forgot his bathing suit and had to buy a tourist suit. Of course it was a bit too small and he was borderline indecent at the hot tub. He thought I took his suit out of his bag on purpose. Sadly, I can’t claim that idea. Jiminy had some vaccines today. I got to say hello to some of my favorite co-workers. Jiminy was tough and I was proud of him. He didn’t flinch or cry from any of his vaccines or blood draw. He is 5 pounds of toughness.

 I took today off. I decided that I had been worrying a lot and need a mental break. Ethan and I set off for his nephrology appointment. We had a good chat in the car about politics, abortion, protest groups, summer plans and his friends.  They were all thoughtful conversations that resulted in sharing views and ideas. These little chats give me insight on the way he thinks. He is his own person with his own ideas. I can appreciate his point of view. Sometimes it was the same and some times his point of view was different. We both accepted that we can respect any difference in opinion. We met with the nephrologist. She collected Ethan’s history starting at birth. Oooofffffff! She had limited lab information, so she was comparing the numbers she had, and the  numbers I had access to from Columbia to develop trends. It appears that Ethan is NOT in rejection (yay!). He just needs to increase his drinking. If he increases he drinking, he won’t need to worry as much about his potassium inta

 I slept well over night. I got up at 4:00 am and started to work. I worked until a little after 8:00 am and then started to feel off. I laid down and took a nap. I felt like a dog napping so early. Well it did the trick, I felt fine the rest of the day. I am glad I was able to take the time to rest. I feel like it was my body’s temper tantrum from the lack of sleep on Sunday/Monday Paul asked Ethan to clean the garage. This is a fun little tug of war that they play, which traditionally is no fun at all. Paul was having people over and needed a clear path to the beer fridge. That is not too much to ask in his own garage. Our garage looks like a bomb of car parts and tools went off. Woven between tools and parts on the floor is a healthy layer of garbage, empty boxes, packaging material from car parts and filth. I asked Ethan today to make sure that he picked things up as it was important to Paul. Paul was running late and I never checked Ethan’s work because he is an adult and can typi

For the most part last night went well. I do have a few work buddies. One is this lady that is about the same age as me. She calls us “the old ladies” and is constantly saying “look at us two old ladies running circles around these guys!” She makes me laugh. I have a guy that I work with. We work well together. We are both somewhat ADD and can’t focus on one fast at a time, but we seem to get the work done. We work well as a team. I like my Sunday night crew. We had some precious patients. From puppies to old kitties. Crabby to happy. Of course I gravitate to the crabby ones. We did have one animal code. I played my role well. However, it sort of was organized the same way that Ethan’s code was. Everyone came running, we quickly organized compressions, timed drugs given, with the haunting vacancy of the fixed pupils. We worked as a well oiled machine. The patient didn’t survive. There is a lot of death.  I am glad that we are there to help. While I don’t enjoy animals sick and dying, I

 I woke up knowing it was going to be a long day. I was hoping to tire myself a little bit for my rework nap. I went through my dresser drawers for donations. That in itself was a big job. I got a little bit of fitness in on my walk with Penny. It came time for the forced nap. Do you think I could fall asleep? So yup. It is going to be a full “up for 24 hours” kind of night. Last month I was getting tired by 10 pm ha ha and I had a nap. Ethan and Paul put the engine in his car, finally! This has been a long time coming. This is most definitely a big deal! I only have myself to blame. I need to manage the things I spend money on a little better. Being an adult sucks sometimes when you have to be responsible.  Work was pleasant (so far). I wasn’t even as tired as I was a month ago! Yay!  I am glad I am working to keep me occupied for what the bloodwork might show for Ethan. I am a bit nervous.

 Today was quiet. Still nothing from the pharmacy on that last remaining script Ethan needs. The doctor said she sent it twice. Not sure where the hold up is. Luckily Ethan has enough for the next few days. I visited with my mom and Gene today. We got to see Avery for a little bit and I had to drop something off at my cousin’s house. We are going with them to Aruba in a few weeks. Yay! Happy 25 th wedding anniversary to Paul and I. It is our celebration. I did some thrifting today as well as pulling things out for our Aruba trip. I prepared the suitcases. I have collected some random things we will be taking with us.  I work tomorrow night. Boo! I hope my tech partner in crime is there again. He is good to work with. Next week is a busy one.

 I have two families of cardinals that visit my bird feeders. I love watching them. The men are so bright red, the ladies with their pretty little orange beaks, not nearly as vibrant as their male counterparts but they don’t need to be as flashy as the men. I received so many phone calls today. I felt like a telephone operator. Received calls from 3 doctors offices and twice from the pharmacy. We finally got an appointment with a hematologist. Yay! We had our weekly collections call. Yup…still on-going. We had a nice visit from Nana and Papa with a quick bite to eat at a local restaurant. I had to leave early because I had interviews to do. Boo! Lunch was yummy though. I went to the pharmacy and they had 4 prescriptions ready but there were supposed to be 5. I had to send an email to Ethan’s doctor. She said she was going to fill it yesterday but I guess that didn’t happen. I am hoping she this was done today. Minor set back. No big deal. Today I am in a better headspace. I hope it con

Today was hectic. Trying to get all of Ethan’s scripts refilled. We have several people to reach out to. Juggling multiple medical messages in MyChart, helping Ethan coordinate all of his paperwork for his apprenticeship. Why is there so much paperwork? We needed transcripts, license, and of course medical history, financial history, tax withholding, socioeconomic history. He doesn’t always understand what is being asked. “What do I put for this question”? That was done in between meetings and my interviews. Exhale!  I have to work Sunday night and have to start my first meeting at 10:30am Monday Morning. I told Ethan he was going to have to get bloodwork on his own on Monday because I was going to need the 3 hour Power Nap before my 6 meetings.  Eyeroll. I still felt bummed today. Maybe a touch of helplessness too. I have fixed everything I can. Now all I can do is offer moral support and guidance. There was A LOT of self talk going on. I almost told myself to shut up! I am going to f

This morning, Ethan and I went to get his physical taken care of for this machine shop apprenticeship. I was worried with all the questions he had to answer yesterday, that there would be a problem. Ethan went in by himself and was able to do the entire appointment on his own. I was there for moral support “just in case” in the waiting room, working. Remote work is what I am made for. After, we went to the lab for bloodwork. We go to the one at the hospital because it usually yields results quicker. They process the samples right there. By mid day, I started receiving the results. Ooooffffff! Not good. His kidney values were terrible. Worst they have been since his transplant. I immediately panicked. My panic was all internal. I can hide it well. I reached out to his kidney doctor in NYC first since he doesn’t have an established doctor in Rochester yet (next Wednesday is our initial appointment). She directed us on what to do and he is headed back for bloodwork on Monday. My stomach f

 There was a time when Ethan didn’t want to spend any time in the living room OR with the dogs. Now he is a dog magnet. Sure, he was eating in the picture, but each day his gentleness and care towards the dogs increases.  We don’t really deserve dogs. They are such good therapy creatures. They are good at just being there as a silent reminder that you are loved. They are a reminder to be goofy and it is ok. They share a laugh with us…because we laugh at something they did. They take on the responsibility to protect us.  Paul and I have been really missing Phineas a lot. We even talked about getting another pitty block head dog. Trouble is…there are SUCH big shoes to fill. I know the training will fall on me, so I need to be ready. I am not quite there.  Ethan had a therapy appointment today. The therapist is allowing me to help her understand the things he is not able to verbalize.  I was able to describe Ethan becoming frustrated with feedback and shutting down. Some things he doesn’t

Paul accidentally left his phone home today. I was playing his secretary. I was calling him and telling him about the texts or calls he had gotten and he was directing me how to answer. Team work. Venturing out without your phone is like walking around naked in public. It just doesn’t feel right.  Ethan is ready to tackle his therapy session tomorrow. He is still in the nice/nice phase. We will reassess once things get a little harder. Ethan did drive out to the driving school to fill out paperwork. Next he has to schedule a DOT physical.  Avery found out she was selected for the research project she was really hoping to do. Yay! She will be using magnetic nanoparticles to filter e-coli out of drinking water. She will get paid. They will allow her to live on campus for free. And she does get to take time away when she wants to camp with us. Nice job kid. I washed my sheets and let them air dry. They smell amazing. This is one of my favorite things.

 Kristen made it home from the hospital and was resting yesterday. She is headed in the right direction and will be following up with her doctor. I broke our rug shampooer today. Somehow when my back was turned, the cord got sucked up by the brushes and damaged the cord causing it is do a mini explosion within the machine. I heard it make a funny noise, turned to look and there was a fireball briefly inside the machine. It singed the carpet and shut down the machine. Holy crap! I told Paul that I broke it somehow. After his initial reaction to blame me, we exchanged some words. Typical husband and wife bickering. Moving forward….he was able to cut the damaged part of the cord out and reattach it. Wow! Works good as new now. We spent the afternoon at a friend’s house “watching” the masters. For me it was more visiting with friends. We also ate very well and everything was delicious. One of the conversations we were having is how the structure for kids in their early 20’s is flawed. The

 We spent the night at Brian and Kristen’s. Kristen wasn’t feeling so hot this morning. We went to breakfast without her because she was feeling a bit nauseous. When we returned, her symptoms were getting worse.  They called the doctor who advised them to go to the emergency room. We decided it was best for us to leave and we will reschedule our weekend when Kristen is feeling better and can be a part of it. She got some fluids and testing done and was given medication to help her feel less nauseous. She was feeling pretty bad about “ruining” the weekend for us. She didn’t ruin it at all. We were concerned and will have a re-do soon. We got home and Ethan had a friend over. Paul and I did some cleaning and then sat on the couch for a bit. They were watching movies.  Last I knew, Kristen was given some medication in the hospital and was sleeping.

 Paul and I spent some time at my brother, Brian’s house tonight. We had good food, great chats and lots of laughs. We learned about more reasons why my one (of two) nephew is kick ass!  I am excited it is the weekend. It was a nice way to close out the week. I was looking forward to it!  I talked to Avery today. She sounded happy. She thrives at school. I can’t believe she is going to be done with her first year of college in a few short weeks.  Ethan has found a new appreciation and love for Penny. I thought this day would never happen. I think he is learning to appreciate what she excels at and ignoring her flaws. Yay! Time for bed. We have a busy day tomorrow.

 Paul has been feeling a little off for the past week or so. He thinks he may have Lyme disease. He set up an appointment with his doctor for the morning and had to fill out his pre appointment questionnaire. He started reading the questions and followed them with a stream of swear words. “How often do you have gatherings with friends and families” “Are you a part of a club?”  “How often does the club meet?” Paul paused and said “what kind of bull $h*t is this question?”  “Why do they care? What are they doing with this information?”…..pause…he lowers his voice “well I see here you are part of a club….” As if that was helping to make the diagnosis. “How many places have you lived in the past 12 months” for this one I told him to write 365 places. Just see what happens. As the questions went on….Paul was getting more vocal about his answers and we were coming up with things he could add to his answers to make them more colorful. Has there ever been a time when you didn’t have a steady p

Today was a smooth day. Work is going much better this week.i had the windows open again today. I am ready to have this weather be the normal.  I even was able to watch a movie while sourcing this morning. It was a pretty uneventful day.  I had a lull in my day and did some food prep. I made 8 lunches for Paul of some tortellini soup, with spinach, tomatoes. I had a little for lunch and it was pretty yummy. At one point I looked up and Ethan was in the tree. At one point he put pallets up in the tree. Occasionally he climbs up there.   Ethan had a friend over for a bit this evening. It was a good day.  

 Weather can affect our mood so much. I felt so good today. The sun was out. The air was warm. My flowers danced in the breeze! The dogs and rabbit got lots of outside time. I like that my computer is portable. I got a nice dose of vitamin D. A friend of mine stopped over for lunch. It was great visiting with her. I am glad I have the flexibility to have those moments. We sat outside while we ate and caught up on life. Today was the first day I have felt caught up with work since my trip. Punishment for being away I suppose. I received a text from one of Ethan’s favorite nurse’s today from cardiac ICU, 9 Tower in NYC. She is going to be in the area in a few weeks and would like to meet up. She wanted to introduce us to her daughter. We have a lunch date set up. I love that these relationships are still going. Avery is going to come to since this nurse feels like she knows Avery. I am ready for the weather to be nice for the long haul now!

 Happy solar eclipse day. While the weather didn’t cooperate for us, we still spent time outside and it got very dark. The birds stopped singing. The peepers started peeping. My dogs and rabbit were clueless. It got midnight dark. Really, really dark. I was glad to have experienced it. Poor Paul was stuck on a work meeting but he did the meeting outside so he could watch as well.  It was quite a cool experience. I liked how it seemed the earth just went to bed for a minute or so. It was nice to watch the eclipse with Ethan. Whenever we do anything together, I always think “what if….”  “What if I never had this moment?”  What a blessing to see my kid smiling. I totally enjoyed it.

 Today was eventful. Ethan was out in the garage and found a Milk snake. He walked out of the garage with it dangling down. Of course we were touching it. It was so soft. Don’t worry we washed the salmonella off our hands afterward. As we were getting ready to let it go, it sunk its tiny fangs into my skin. No worries, they aren’t venomous. It didn’t even hurt. We relocated the snake closer to the wood pile to get any mice that are living over there, all cleaned up. I don’t mind snakes. Ethan CERTAINLY doesn’t mind snakes.  A friend and myself went to the psychic fair. I had a reading done. It is amazing how accurate the information is, and they only have your first name to go by. We received $10 of free play money. I cashed out at $24. We used that to put towards lunch.  I bought an off color/ significantly inappropriate sticker and blended it in with the existing stickers on the refrigerator in our garage. Now I wait to see how long it takes Paul to find it. Ethan helped me pick out

 I needed to distance myself from work today. I submersed myself in chores until I met a friend for lunch. We chatted for the majority of the afternoon. I then did errands around the town and visited with my mom and Gene.  Paul and I made plans to go on a date. It was an exciting night as we headed out to browse Lowe’s and then go to Margaritas. We were getting ideas on planters and getting pricing so we can budget for them.  Our meal was delicious as always and there was no wait. I attribute this to their efficiency. They are getting people in and out of there. It was steady with zero wait on a Saturday night. My kind of place. Plus I got my favorite margarita. It was worth every penny.

 I saw someone post on Facebook today that they hoped the weather was terrible for the eclipse and no one could see it.  The eclipse is a cool thing to see. I will likely step outside to watch around the time it happens. It is NOT consuming my life. But I will join in watching, because I can. I can’t even fathom why you would wish ill on something that is important to so many people. I felt sad for that person to have such malice for something that may bring joy to so many people. Also, some things aren’t worth sharing. There was no real reason for this person to make this feeling known to everyone. I am kind of at a loss for the reason behind this post. Ethan went to The Little Speed Shop today. He put new tires on his Supra. He wanted to make sure they are balanced. He was so happy to see his friends there. He will be attending their cars and coffee event tomorrow. This morning I went outside in the rain and filled my bird feeder because Lord and Lady cardinal have been eating like p

 Ethan and I had a good chat today. He was trying to make connections about how he acts and why he does what he does or why the thinks how he thinks. I feel like this is a step in the right direction. We also chatted about the difficult transition from your teens to an adult. It is hard enough. Pile on what Ethan went through, the medical appointments, testing and then friends moving forward while he is stuck, of course it has been hard. I try to approach him with respect for everything he went through, grace to heal and empathy. Some days are harder than others for me. I want him to be doing certain things. In reality, it’s not for me to decide. What I am glad about is that I am seeing growth and this warms my heart. Ethan filled out paperwork to attend the driving school to help him get a CDL. We stumbled across the question…”Do you have epilepsy?” Well crap! He answered truthfully. But it may affect on if they move forward with him.  I never even thought of his stupid seizures becau

 I was reflecting on where I am at and what I have learned. I am not sure why, but I did it anyway. These are the conclusions that I came up with: Every obstacle can become an opportunity is some way. The trick is, to find the opportunity. Learn the difference between “me” problems (problems you can control) and “them” problems (problems someone else controls). It will make it easier to deal with if you can easily identify and assign the problem. Trust the process. Life has a funny way of working out and delivering you the appropriate life gifts. If you are a crappy person, you will get dealt a crappy hand. If you are half way decent, life will put glorious things along your path.  Life can throw you some pretty terrible things. You can always learn something. Whether good or bad, there is something you can take away. Avery and I play this little game. When one of us starts complaining, the other will say, “Now you have to point out something positive”.  It is a way to call attention t

 Ethan had his therapy appointment today. We are going to give this a whirl again. He is in a much better mind frame to accept help as well as open up. He has a tendency to close down. I was able to help him answer some of the questions and provide time lines and such. I will continue to be present until they ask me to step away. Ethan has clear goals with therapy this time around and I am so hopeful that he engages in it to become the best version of himself he can be. I think he is hopeful too and wants to learn more about himself. I have been working more hours than I should be. Sometimes my brain hurts. Work hard, play hard right? I won’t be too upset when I am in Aruba next month. It’s hard to believe our 25 th wedding anniversary is coming up.

I like to tease Paul, play jokes on Paul and trick him. I like watching his reaction and it doesn’t disappoint. This morning, he was standing in the kitchen, in his underwear, putting his English muffin in the toaster. I walked up behind him and pulled them ALL THE WAY DOWN TO HIS ANKLES. April Fools! He made a noise of disgust and started laughing. He muttered something about me being a “pain in the ass” but it gave us both a chuckle. Ethan met with a psychiatrist today. They had him go in first and collect his information. He was in there a good 40 minutes alone. When I was able to join, they had a few questions about Ethan’s stroke, and other contributing factors. This psychiatrist works with heart failure patients almost exclusively. She had some interesting information, like there is an increased chance of neurodivergence in cardiac pediatrics. They think it could be cause by poor perfusion (which is a doctorate way of saying a passage of fluid through the circulatory system. Like