Ethan’s Journey

Ethan and I had a meeting with Vocational Rehabilitation Services. This  is a service that helps those with disabilities to set career goals for themselves. This service also helps them achieve these goals. There is some paperwork and documentation that goes along with it, but it is fairly straightforward. Tomorrow I am going to try and get as much of the documentation they need to get the ball rolling as I can. Ethan also has to provide some information on his end as well. Tomorrow is lab work day. Hoping for some quick lab work, even though our 6 page stack of tests throws the ladies off at the lab. The dogs were crazy today. I had to take them on an extended walk to get their energy level back to normal. Penny was chasing the birds like a wild woman.

 We made it home. It was so hot as we unpacked. I gave Phineas a hose bath and that help cool things down so I could keep unpacking. The way home was exciting. As we were getting ready to leave, the truck wouldn’t start. After a string of obscenities, Paul tried to charge the battery. Nope! After a LONG time, he decided the battery was just not holding a charge and tried to jump start it. There were several attempts made to do so.  I told Paul it was a sign we shouldn’t leave. My aunt and I fixed the truck. After standing for a LONG time, we decided to get out chairs. As soon as we both sat down, the truck started. We must be magic. We also decided that we should have tried that sooner ha ha. After we finally get on the road, the truck starts with a funny vibration. The farther we drove, the works it got. As we were entering in Rochester, the truck felt like it was continuously driving over semi large rocks at a fast pause. Poor little Jiminy was bouncing all over my lap, airborne. The

 After twenty two years of marriage, Paul continues to compliment me in ways I have never heard before. He speaks with elegance. As we were discussing how the other slept last night and how Phineas was hogging the bed, Paul busts out with “well I didn’t sleep well, you were rolling around in the bed like an animal that was shot but didn’t die.” Epic! Today was a relaxing day. It was full of Taunting each other and enjoying each other’s company. All the neighbors come together and help one another put the docks in. This is especially heartwarming due to our recent events in the news of horrific crimes. These are people that come together and help one another.  The men put there waiters or swim trucks on and go into water that is approximately mid 50’s degrees, multiple times, until all the docks are put in. Then tonight, some of the people that were helping, came and sat at our campfire as we laughed the night away. Paul was getting louder and louder….his hands had larger movements all

It was misting last night. I woke up around 7 am and was delighted I got to sleep in over 2 hours. This NEVER happens. I took the 4 dogs on a 30 minute walk to everyone could do their poops and pees. While walking, it was still the finest mist in the air. By 9:00 am it started to clear up. I started working on sprucing up the garden (we are camping at my Aunt and Uncle’s property) with my Aunt.    Weeding, planting some colorful annual flowers, and then mulching. It looked pretty when we were done. Paul started to reduce the square footage of the rotten cottage on the adjacent property. The lawn was mowed, sticks picked up, and weed whacked. We worked together as a family to be able to enjoy the property all summer long. Phineas helped take big rocks out of the lake. He fetched big sticks. He picked things up and put them down. He is aging, but still a puppy at heart.  All the “littles” went on walks with Avery’s friend’s dog, who is also camping with us. Everyone got along well and ha

 We are camping this weekend. Avery and her friend came along. We told her friend that she could also bring her dog. So we have 4 humans, 5 dogs and a rabbit. Paul is being quite tolerant. 2 of the 5 dogs are less than 7 months old. Ahhhhh, the first trip of the season. The weather was less than stellar today, we arrived last and was blamed for bringing the rain. I can proudly say that I camp so my dogs can have fun. (But we always have fun too because we love our camping groups). Phineas is pumped to go swimming tomorrow. Avery’s friend’s dog also likes water. We are hoping Phineas can show him some tricks. Ethan stayed home this weekend. He is hoping to get together with some friends. He also has more working on his car and things like mowing the lawn. We ate dinner at a place that had a covered patio right on the harbor. It was a beautiful atmosphere. Dinner was delicious. All bright spots.

Today was long and frustrating. Once I was home from work, the day was much more delightful. We went to trivia night again and actually came in 3 rd. Yeah us! I need a break and am totally looking forward to this weekend.

I approached the morning with robust enthusiasm. I was certain I was going to accomplish 3 days worth of tasks in 1 day. I was pleased with my accomplishments. I worked on Jiminy’s helmet for a solid two hours. By the end, I may have needed a helmet…..to keep myself from ramming my head into a wall.  The material is moldable but you have to keep warming it up. By the time  I threw in the towel, the helmet looked like something a toddler made out of clay. Paul gets a MVP award. He had a good deed that got him home from work at about 8:15. He also brought home Bill Gray’s French fries. Then promptly jumped on the lawn mower and mowed until dark. He can’t mow tomorrow, due to our trivia night date. My bright side was taking the dogs out for our field walk TWICE…without any of them rolling in something dead or super gross. Even Theo enjoyed the sunshine as I did a little gardening.

 Ethan worked on his car today. He is done with school for another week or so and then the summer semester will start. We met via zoom with one of his nephrologists today. We went over all his medications and we will be making a plan very soon to start weaning off the Coumadin as well as a few more medications. We will at our 6 month post transplant on May 30 th. I started trying to negotiate skipping a June in-person visit. I am hoping they say yes. My argument was that he has had no swelling in his legs, things have been stable and it interrupts his new school schedule. Even better, if we go in July, we can pair it with his heart catheterization, Ekg, echo and cardiology appointment. It will reduce the days he has to miss school.  Phineas was a good boy today, he donated blood to help a fellow dog stay alive. The recipient of the transfusion was only 18#. I am hoping that little dog does well over night.  Phineas fell asleep towards the end of his blood collection. The picture is of

There are some days when I am so thankful for our friends. So thankful, that I often wonder if I will ever be  as good a friend to them as they are with me. I will continue to actively try. A few friends have recently gone through some difficult situations. When they hurt, I hurt too.  Ethan struggled with school this semester. He likes his automotive classes. He HATES his general education classes. Trying to juggle those classes with his depression is almost impossible. We talked about him taking less classes per semester or doing his general education classes later. Ethan really wants to plow through it and get it over with.  I started working on the mold for Jiminy’s helmet. It wasn’t graceful at all. Jim fell asleep so that was good. I think I have a 50/50 chance that my prototype might work. At work we were talking about some of the funny skits on SNL throughout the years. I have shared a lot of laughs with people bonding over SNL. I don’t nearly watch it as much as I used too. My

 Today was a puttering day. I organized the camper, did some meal prep and did laundry. We finished watching “Candy” on Hulu and really liked it. I was able to walk the dogs a couple times around the field. They lived that. They also got some yummy surprises in their kongs. Avery and I decided to try to make a helmet for Jiminy. He keeps making clumsy mistakes like tripping over his own legs, or running into things because he isn’t paying attention.  I ordered some moldable plastic that as it heats up, it becomes pliable. The other helmet just was moving around too much. (Yes Melissa, you can make fun of me ha ha) we just need something to protect his mushy brains under his skin. Ethan removed the sunroof in his car as park of his building his race car. All in all, it was a good day full of bright spotsz

 I mowed our field today as Paul mowed the lawn. The grass was blasting me because the wind was so prevelant.  When I was done, I came I. The house almost barely able to stay awake. Damn allergies. I took a nap.  We had friends over this evening for a campfire. It was nice to have the gang together. We chatted the night away as we watched the storm roll in. The lightening was surrounding us until the sky fell out and was showering us. We had the dogs and rabbit out for hours. The dogs were ushered in the house as it began to rain. But where was the rabbit? He is pretty smart and stays close. After having to part all the day Lillie’s to look for him, he was finally found, staying dry under the day Lillie’s. Smart rabbit. We moved inside and had great conversation. I ate my weight in garlic and herb cheese curds. Yum! Our bright side is our friends.

Ethan has our garage all torn up by working on his car. He spent a good part of the evening in there. After I got done with work (TGIF), I worked happily in the yard, enjoying my solitude and gardening. Trimming things back, weeding, talking Paul into not weeding for me because he pulls all my flowers out “accidentally”…..  I had all 4 dogs and the rabbit outside as I worked. The rabbit, Theo, stays close and doesn’t really need to be monitored too closely. All 5 of them were outside for a couple hours. Theo likes to play hide and seek. If you call his name, he pops out of where he was. He is a cool rabbit. He kept hiding behind the bush…..but I could still see him. The weather was delightful. I was able to take the dogs for a walk 2 times. They thought this was great. Penny rolled in some sort of poop. Eww! I told her it was NOT lady-like to roll in poop. She was prancing around like the scat dog that she is. I am a little obsessed with the Johnny Depp case. The more I watch, the more

Ethan worked on his car today. He didn’t have work or school. As he muddled through his mental health journey, he was able to do something he enjoys. However, he would prefer to drive cars over fix them. Jiminy got his helmet today. Ethan was supposed to make one but hasn’t yet. After Jiminy ran into the chair and went temporarily blind, I have been looking for a helmet for him. The one I got isn’t going to work because it isn’t as secure as I would like it to be. It wasn’t the right fit, so I will return it. He looked really cute though. But his ears were smushed and looked uncomfortable. We were asked to go to “trivia night” with some friends at a local brewery. Paul and I kinda suck at trivia unless it is about cars or animals. We didn’t come in last place. Woo hoo! We had a fun evening. We are going to do it again soon! Isn’t Jiminy cute?

 My day off went well. I accomplished many tasks and caught up on banking, appointments and emails. Ethan had his lab work this morning. His creatinine was a tick lower…almost to the normal range. His white blood cell count is improving.  Avery was out of sorts today with all the stress of her upcoming exams. Ethan was feeling sad. The theee of us went for a walk with the dogs. The walk will help us to release endorphins.  I hope it helped them both.

It was such an odd day today. Work was…well…they don’t call it work because it is easy. I was able to sit with some friends at lunch. It was fun just to be myself and not put much thought into my contributions to the conversation. We joked and laughed. It was good for the soul. After work, the kids and I went to dinner with our friends. We were goofy, we laughed a lot and Avery was my designated driver because the name of the place we ate was literally Margaritas….and I had two. They were delicious.  Good company, good food, and lots of inappropriate laughs.  When we arrived home, the dogs were so wound up. They were running and playing in the yard like maniacs. Jiminy was full of beans. He was prancing around like a goofball, chasing the other dogs.  The day left me feeling happy. It would have been better if Paul came. He didn’t come, because I didn’t give him enough notice. Bad wife syndrome. He had errands to accomplish. I think it worked out the way it was supposed to. We have pla

Ethan called the 14 year old that is in the cardiac ICU in New York City today. They chatted briefly. Someone then walked in the room and he had to go. Ethan will try again tomorrow. Avery has been studying hard for her psych exam. Tonight she had me help her. Yikes….she has to know a lot. Today was the Mondayest Monday ever. The computers at work broke, internet was down, we were down 4 people, and I was running around trying to resolve the computer issue. It was a mess. My bright spot is it is now over. 

I called the mom, who’s child is in NYC in the ICU. We chatted and compared stories. Her son is on CVVH, or as we called it “Janice”. I told her about how we called it “Janice “ because of friends and how often the machine broke down…..apparently the staff had already told her about how some family used to call it “Janice”! Ha! Ethan later tried to call her son. I was so proud of him as he hates to talk in the phone. Unfortunately, her was eating dinner and the Mom asked if Ethan could call tomorrow. I have felt tired all day today. This evening, my head started throbbing. I decided to call it a day and go to bed early.  

Today Ethan had some of his car friends over to the house. They stayed for a while and I could tell Ethan totally enjoyed it. He was smiling his genuine smile.  He has even mentioned that his mental health wasn’t great in front of them. Letting others help carry your baggage with you when you need help is so important. I had some paperwork for Medicaid that needed to get done and submitted. I didn’t do it. Instead, I started watching the Hulu series, Candy, with Avery and Ethan. I don’t watch much tv anymore, so this is a big deal. There is always tomorrow with paperwork. Paul walked in, and the show sucked Paul right in. He was enthralled. He thought it was a movie. About 40 minutes in, we told him it was a series. He got so pissed. He doesn’t like to sit still to watch tv and now there are episodes…plural.  As the next episode started, he got up and left….only to return a little while later to inquire about what he had missed as well as come up with a theory.  This rarely happens wit

Tonight the air is still. The birds are chattering. Each is singing it’s prettiest mating song. The bullfrogs are  singing their repetitive, low pitch, slow WOMP noise. My family describes the noise as either a “slow motion farting noise” or “gastric-intestinal upset” noise. Either way, it offers some sort of peace to the night vibe. Avery and her friend joined Paul and I. One by one the animals went inside as they strayed away from the fire. The last hour or so was just the rabbit, Theo,  and little Jiminy. Theo was just eating all my flowers. Happily hopping and munching away. The dancing flames were calming. The flames a beautiful orange, purple color. Paul and I chatted. It was more that Paul listened while I had explosive verbal diarrhea all over him, while we sipped our Kolsch beer. I spoke with Ethan’s Automotive Program teacher. We discussed some of Ethan’s issues with school. He gave me ideas and I need to sit down with Ethan and figure out what he wants his plan to be. I real

Today I worked my 14 hour shift. It was a long day. My feet are throbbing. Only 5 more to go. 😊 I have found myself in a cloud of melancholy these past few days. As Ethan opens up bits here and there, the more perspective I gain about how much he is hurting. Sometimes it makes me hurt too. I mean, how do I fix my broken kid?  He is finding less and less joy in things. I have always said to him, “find your joy.” It seems things that brought him joy a couple months ago, now longer stoke his fire.  I read all your comments and appreciate each one. Thank you! Sometimes the brightest spot is knowing you aren’t alone.

Days off are a gift. Today I slept in (until 5:30) and it was amazing. I was able to accomplish a long list of tasks. I sprinkled in some sunshine therapy, dog therapy and a little of both. My days off are still busy it seems. Ethan and I met with his neurologist and discussed a plan regarding his low white blood cell count. Unfortunately we have to go to the lab next Wednesday for labs. If his counts don’t improve, he has to go on injections to help his numbers. He was NOT thrilled with that news. I was able to do 8 loads of laundry, shampoo the couch, wash Phineas, unpack the winterizing of the camper by making the bed with fresh clean sheets. Put all the pots, pans and silverware away, reload the cupboards, several trips back and forth to the house, a little gardening and pick Avery up from school and stop at Abbott’s on the way home. YUM! When I got home, I did some gardening and then meal prep that involved making 3 meatloaf pans, veggies and couscous. I sent some emails regarding

Today I had one of those days where I wanted to quit my current life situation and start a new one altogether. A series of events happened where I was left frustrated, mad and cranky.  At one point I was thinking about how ridiculous it would be to walk in the doctor’s office and ask for medication to make me “hate people” less. Is there such a thing? Ethan’s endocrinology team evaluated his most current labs and decided that his hypothyroidism is controlled. There will be no change to his medication. We still will move forward with that the MRI of his head in August and that appointment doesn’t need to be sooner. Avery had to go to the lab to have her vitamin D level checked. She was running low and has been on supplements. I suspect all is well. She did well with the blood draw like the tough kid she is.  My bright spot was that I was able to walk all 4 dogs in the field. It is finally dry enough. We stumbled upon a baby deer. It was startled and cried for mom. Truthfully I was start

I spoke with insurance today regarding the collections calls and letters I keep receiving. One of the claims was for an X-ray taken in February of 2021. It is the only X-ray we owe for out of the DAILY X-rays taken. Apparently insurance approved the wrong amount, so that is being resolved.  The other two claims they are working on, we’re from visits with the nephrologist, that they told us we had to go to. Apparently those two visits were the only two not covered. What? That makes no sense to cover all but two. Sometimes it seems like it is never going to end! I was quite productive today. I am bragging. Even at lunch, I called in for 4 prescription refills, then picked them up on my way home….left me feeling…...accomplished.  I was able to give Jiminy a bath. He was stinky and shedding. Then we snuggled as he was swaddled. He is a friend that I didn’t know I needed. He is my bright spot! (All the dogs are, but don’t tell them.)

Happy Mother’s Day to all the beautiful mom’s out there. To those that have lost their mom, I am sure they were shining down on you today. I think of all the mom’s that have had the grief of losing their children before they, themselves pass away. Jiminy is feeling himself today.  He was back at running around like a little terror. He had me a bit nervous. Paul and Jim took a nap together on the couch. You can hardly see little Jim’s head poking out of the blanket. Avery had a blast at prom and was super tired today. I am also tired. We had a pleasant afternoon at my mom’s house. We had a picnic style dinner. My mom makes the yummiest potato salad. It surpasses any other potato salad I have ever tasted. Everything was delicious. ❤️

Avery had prom today. She was so excited. I was also so excited. We did her hair together. It came out perfect. Her style is cool, and iconic. She didn’t want anyone to have the same look. I am not sure who had more fun getting her ready, me or her. She had her friend do her makeup. It came out stunning. When she put the whole thing together, WOW! We took all sorts of pictures. She wore her outfit, the outfit didn’t wear her. She stood out because she had a ray of light surrounding her. She was happy.  My most favorite picture of her, she was laughing at a joke her friend had just said. Her soul is laughing. I look at this picture and can feel her laughter. I can’t help but smile. Later in the evening, Jiminy ran full speed into the wooden leg of a chair. He cried. He then began walking in tight circles and acted blind. As the night went in, he regained his vision, thankfully. I gave him some medicine to help with inflammation. He then fell asleep and Phineas was babysitting him. Never

Made it home in one piece. Yeah! Uber ride to the airport was so much nicer that the one earlier in the week. I saw a fun sign in the bathroom reminding everyone that a “courtesy flush” is an option. It actually made me laugh. I spent the day puttering around, catching up on general cleaning, camper preparation and dog walking.  Tomorrow morning we go to the lab, with Ethan’s new rejection medication dose, to see how he is doing. We also stopped the antiviral, so hopefully his CBC will be a little better. He seems to be feeling a bit better emotionally as well. Tomorrow I am excited to watch Avery get glammed up for prom. I am planning my entire day around it.

A pessimist sees the difficulty in every opportunity. An optimist sees the opportunity in every difficulty.  This was a quote that I stumbled upon that seemed quite powerful. Lately I have felt myself lose a level of optimism. I don’t like the way that feels. Sometimes i need these little life nuggets to remind me what my goal is. Remind me how I want my mindset to be and how to live. When I woke up this morning, I did yoga. Normally mornings are very rushed because they start hours earlier than many. Today, I was able to do it and my body actually felt better. I liked that and hope to have the opportunity to do it more often. I want to be an optimist, the only thing that stands in my way….is myself. So tomorrow I will reset. I am going to wake up as an optimist. I will let you know how long it lasts. I do have to Uber to the airport, so I am worried that might kill my goal. Ha ha.

Today was full of education. After hours of education, it is nice to blow off steam. This new company we work for is great and provided not only dinner, but drinks, and entertainment. We went to an axe throwing bar. Yep. A real axe. After hearing all the rules, I was throwing axes. I didn’t do too bad….which makes me more confident if someone tries to enter our home uninvited…..if they can get past the 4 dogs. If the circle was an intruder…..buh….bye!!!!! We learned a bunch of stuff today and brainstormed some ideas. It is exciting to bring this information back to be implemented. All in all…the bright side….the opportunity to take a step back an assess where things stand.  I am thankful I learned a new skill to keep the family in line.

I am pretty convinced that I attract weird stuff when I travel. I worked a full day and then flew to Michigan for a work training seminar. The flight was delayed, but we eventually arrived. I had an Uber come pick us up. A man arrived. He was scrawny, his hair was greasy and slicked back and his car had a bad smell. I can only describe him as jumping out of the car to open the doors for us. However, I didn’t realize this and tried to open the door myself. He almost knocked me over so he could open the door….it was so startling that I gasped. He used spastic motions to help load our few bags. He had a n utility blanket in the back of his car that I was sure he was planning to use to roll our bodies up in, after he murdered us. I immediately put my fingerprints all over the car, in weird spots….just to help catch our murderer…..you know…if it came to that. Once we were in route to the hotel, our driver was silent. We were silent. I exchanged some fun texts with my coworkers, but we didn’

I am able to zip home on lunch and walk the dogs. I really cherish this time with them. Also, all my flowers look so pretty. Mix in the combination of not too hot, not too cold temperatures, it was enjoyable. When I got home from work, Avery’s prom shoes had arrived. They make her so tall….even with her curvy scoliosis back. We were trying to come up with earring ideas. I went through my jewelry chest. I found some of my grandma’s old costume jewelry that I have had since the 90’s, she likely had in the 60’s and 70’s. That was fun. I also found some watches that I got from an estate sale that looked like they belonged to an old, snooty but elegant woman that looked down her nose at people. I put them around Jiminy’s neck. He was a good sport. He looked fabulous. He was “helping” go through the jewelry, by grabbing an empty box wrapped in a twine bow….and prancing it around proudly. He thought he had the best prize ever! Avery tried her outfit on and looked so pretty. I can’t wait to se

Today was a gift. The weather was pleasant. We didn’t have set obligations. Paul and I worked like busy little bees, him outside and me inside and outside. I really loved having all the dogs outside while I worked in the gardens.  In the newest bird feeder drama, the squirrel has been eating the bird seed. He hangs upside down. Phineas has recently discovered this new kind of TV. He just watched and watched the squirrel. Kind of like a peeping Tom…..but a peeping Phineas. The dogs give me so much joy. I remember being away from them for so many months. My heart was aching for them. Now, I get to play with them while I garden. At one point I took a break with Paul and we were sitting on our patio on the swinging benches. All the dogs were on my lap just swinging away, enjoying the slight breeze. It was bliss. It is our 23 rd wedding anniversary. We decided we will try for another 23. We can see how it goes, ha ha. We went to dinner, just the two of us. We caught up with each other’s gos