Ethan’s Journey

I am not a perfect mom. I don’t make dinner every night. We don’t sit around a table and have dinner together. What I can celebrate is that at least we can have healthy food to eat in a hurry. All 4 of us get home at different times and are hungry at different times. I did food prep today. I stocked the freezer with lots of different options for us to eat “on the go”. I get accomplished. Avery is still on the prowl for junior prom shoes. She wants red and strappy. After visiting several stores, we had to resort to online shopping. We got some free tulip trees and red maple trees compliments of Sierra Club. I spent some time planting them, watering them and telling them home pretty they are. Ethan worked on his car a little bit. Paul mostly put up with me heckling him. Good night.

 Tonight we went to see a comedian, Jim Gaffigan, at the auditorium theatre in Rochester. Paul, Avery and I went, with some friends. The show was utterly hilarious. He is quite good at his craft. The show started at 9:30 pm, which is well past my bed time. We got home super late and we are going straight to bed, after the dogs go out. Can’t wait to snuggle in my bed.

I got an email from Ethan’s cardiology team. When I spoke with them yesterday and was talking about how Ethan has started feeling so tired, they tacked on some thyroid monitoring bloodwork to his labs.  They had me talk to endocrinology to discuss Ethan’s current dose as his level was borderline low. I reached out via email on my lunch break. Some days I feel like my days don’t belong to me. I have to do and accomplish for others. I have accepted this, but today was one of those days. I am grateful that it was tested and noticed.  I am feeling quite tired this evening. Probably trying to catch up from the last week or so. I have to listen and follow my body’s orders. Happy 50 th birthday Grant!!!!!! You are old!

The ride across the bridge, the 3 miles we drive (the Uber drives) is bumper to bumper and moves at a snails pace. I have often considered walking it as I think we would get over the bridge faster. However, not that much faster and since I am a little bit lazy, we will go by car. Ethan was in good spirits this morning which is good. Since he has been feeling more tired lately, he has voiced concern that he is worried about his kidney function. The bloodwork won’t lie. We went to nephrology and they were please with how Ethan is doing. We mentioned him being a little bit more tired over the past few weeks and they said that the blood work would be helpful. We went to cardiology next. Ethan got his EKG. It’s funny because his blood pressure in nephrology was 102/60. By the time he got to cardiology it was 119/79. They take his weight, height and blood pressure at each appointment because apparently the systems don’t talk and relay that info. That’s annoying. We waited about a half hour,

Today we drove to NYC. It’s that time again. Tomorrow is a busy day. A day Ethan walks into Columbia Children’s Hospital, smells the smells, hears the noise, sees the familiar halls that he walked over and over again. The trauma of just walking into the building is intense for him. The car ride the day before appointments is intense for him. Today was no different. However, I noticed a change in Ethan today. He chatted off and on the entire trip. This was WAY better than last months trip. Tomorrow will be a LONG day of lab work, appointments, echo, EKG, meeting with nephrology, meeting with cardiology and my own bloodwork….THEN a 6 hour drive home….then back at work at 6 am Thursday. It will be a BUSY 24 hours. Ethan has also mentioned he is getting tired more easily. I do get concerned when this happens. I am curious what his cbc says. I am worried he has become anemic again. Of that is the case, we will deal with it. More moves and counter moves. Wish us luck! 

 Caught 3 more mice today. 🤮🤮🤮 I did the work, pharmacy, haircut, visit with a friend thing today. I don’t mean to brag but I have some pretty wonderful friends. This particular friend is going through a stressful time.  I hate when I can see someone go through something upsetting, and there is little I can do to help. It’s a sucky feeling.  Tomorrow Ethan and I head back to NYC for nephrology and cardiology visits. I am thankful they are only once a month. After 3 more mice caught, I am hoping that is it. 

There is a chance that I may be a little dramatic and over reacting. I doubt it, but everyone else seems to think so.  There is a damn family of mice living in our basement. I told Paul to call the realtor, we need to move. No! This is NOT a dramatic response!!!!! The mouse somehow made it to our den. I saw it as I was pulling the chair covers off to wash them. I let out a god awful scream, as everyone knows that mice will absolutely crawl up my leg and eat my eyeballs out. Then I will be blind. That is if I survive the vicious attack. Also, they carry disease. If the attack doesn’t kill me, the plague it is carrying will. Somehow my family doesn’t buy into my thoughts on the matter and they feel the mouse should be caught and released. Eww! They terrify me. As much as I love animals, this falls into the “pest” category. I don’t like pests. Penny may be a little mentally soft, but she is a terrier. Terriers are known to be decent hunters and they are tough little creatures. I put Penny

My friend, Heather and I, had a nice girl’s day. We spent the day chatting and relaxing. We caught up on each other’s lives, thoughts and goals. We shared a lot of laughs. We tried to gamble in the casino, but quickly realized that we were losing, so we ate instead. We didn’t do too much, but we did enjoy each other’s company.  Heather possibly set off the fire alarm accidentally. All the building was evacuated. No one knew it was her. We played dumb. Partners in crime are life’s gift.

This morning, Paul and I had a rare moment to chat, with coffee, alone. He had just finished reaching down and scooping up our little Jiminy with his big hands. He was petting him. I asked him if he loved Jim. He did agree that Jiminy was a nice addition to our family. This made me love Paul even more. After work, I headed to the casino to meet one of my besties. We chatted the night away, quietly. There was a lot of laughing. My cheeks (the ones on my face) hurt. Nothing says friendship more than, “feel my scar”. “WOW!” “ Now feel MY scar”. We then laughed at the ridiculousness of feeling each other’s scars. We never did make it to the casino. We did have a great dinner, with great conversation. Cherish your friends. 

Back to the grind. Complete with phone calls from the collection agency demanding money for bills the insurance company should have paid already. Bills for services we had pre approval for. We are still waiting for the insurance company to adjust and pay. They have been actively working to resolve this big nasty mess. I made some progress with Medicaid travel reimbursement. I am thankful for that.  Avery had her friend over and when I came home from lunch, Ethan, myself and the two girls were joking and laughing which was great.  Not a bad day. Plus, the dogs were silly tonight, making them this bright spot of the day.🐾  

Flying is definitely an experience. Our experience started as we were leaving the hotel. I had scheduled an Uber to pick us up and take us to the airport. Apparently the guy was ready to leave as we approached the vehicle 3 minutes early, because he chose to arrive so early. What? This man did not disappoint. 😡 As we got into the car the stench was horrific. It smelled like stale cigarettes and a years worth of farts. I didn’t really want to touch the fatty seats. Avery and I both had masks on, as mandated by the Uber app. So the stench got trapped in our masks. We found this to be extra special, at 5:30 in the morning, without being properly caffeinated. I can always tell how Avery is doing by when in the day she starts saying someone should “get hit by a bus.” While she doesn’t want anyone to be inflicted physical harm, for the most part, it is a way to gauge frustration. As we embarked on our excruciatingly long journey of 18 terrible minutes, it is important to remember that every

 Today Avery and I went and got pastries and coffee (me) at at little coffee shop right on the edge of Forsyth Park. We had a leisurely morning and sat by the pool.  We tried to hop on the bus that goes to Riverstreet. We waited….and waited…and waited. We then just started waking. We saw zero busses the entire mile walk. I think we made a good choice. We went thrifting and then headed towards our river boat tour. The tour was cool. It was hot. The sun was glaring and glorious.  I was quite disappointed that it wasn’t a real riverboat. The paddle wasn’t turning and was all the for show. The tour was good and they served margaritas….so I didn’t care that much. We then exited the boat and did some brief shopping. We are at the famous Spanky’s Restaurant, Home of the chicken finger. As we looked over the menu at all the different delicious, I notice porridge. I told Avery that is what I was going to order. She cracked right up. We then walked the mile back to the hote and began to pack up

Today we went on a tour on Bonaventure Cemetery. We learned about how the incidence of people being buried alive was. They started burying people with strings tied around their limbs (after not moving for 3 days) that were connected to a bell outside the grave. 17 % of people buried with a bell, were buried alive. The blue-ish colored thing is the bell. We also learned about how terms like “graveyard shift” came about -the people that would watch the bodies at night for the first 3 days prior to burial (to make sure they are dead). In the 3 days, people were payed out, they would begin to smell. There were contraptions that would allow flowers to be payed, to help cover up the smell of the decaying body, hence why in the modern day, people always want to send flowers. We also learned that vaults and heavy slabs were used to prevent grave robbing.  We had lunch and then spent the afternoon at the pool, getting our sunshine therapy. I may or may not of had a margarita. Avery and I listen

Today we learned that houses like this one: Have separate stair cases leading to the front door. This is because, during the Victorian period, ladies would have to hike their skirts up to walk up the stairs. The men couldn’t possibly control their hormones if the ladies showed their ankles, therefore, they would use separate staircases. We went back down the City Market. I noticed a place called Wet Willies. They had slushie type alcoholic beverages. As I learned yesterday, you can walk around with your alcoholic beverage, so I got one to go. 😀 We had lunch at a noodle bar. Then headed toward the Oddities museum. We have been to a few of these before. They never disappoint. This one had a stellar collection of earthwork from John Wayne Gacy (serial killer). This place also had a Free Pinball room. It had many pinball machines you could play for as long as you wanted. Avery said she had never played a pinball machine. We took a bunch of time and played every game there. After that, our

One year ago, Ethan and I drove home from the rehab facility. He was on dialysis, he was weak and under 100 pounds. So much can change in a year!!!!!!! Today, Avery and I slept in. Wow! I slept until 8. This is unheard of as my normal alarm goes off at 4:50 am and on weekends I wake up early to let the baby outside or take Ethan to the lab. We walked around the farmers market in Forsyth park. We then got on the “Hop on Hop Off” Trolley tour. We heard all about the history of the city, told by local residents that had such pride in the city. We walked around the “Rodeo Drive” of Savannah. We ate lunch at the Pirates House. It was an old house, that was converted into a restaurant,  that pirates used to smuggle hard liquor, through under ground tunnels. We walked around and saw the area of where the old tunnel  was.  We saw a 300 year old oak tree draped in Spanish moss. We learned how the tree got ill and arborists intervened and saved the tree. We went to a tarot card reader. It may be

The alarm went off at 4:15 am. I popped up with excitement. For the last year, every time I have driven by the airport, I wished I was going somewhere. Today, I get to go to the airport exit, with a smile on my face. I packed a week in advance with the exception of last minute items. Avery, at 9 pm last night, started her laundry to wash the things she wanted to pack. As I descended the stairs this morning, I saw my packed area and her “packing” area. Can you guess which is which? We said goodbye to the animals and headed out the door. Paul drove us.  Except Paul accidentally passed the airport and we had to turn around. We had an uneventful check in process. As the agents were boarding the plan, Avery and I both missed the airport announcer calling our section to board. What a debacle it is boarding a plane. Everyone calamors to get on the plane…..to sit knee to knee with someone. People rush to get into the cattle tube, likely to put their carryons in the over head compartment. Avery

Sometimes you have to just be proud of yourself. Today, was one day in a row that I didn’t lose my tiniest dog and have a panic attack. Excellent work Patti! I am sitting a little taller today. After work this evening, I went to a retirement party for a veterinarian that took a chance on me a few years ago and hired me to help work at the shelter. At the time, I was trying to make extra money so our family could go on a two week trip of a lifetime. It took me a couple years to save up, but because of this opportunity, our family was able to go. I continued working there for another year afterward, because at that point, it just enjoyed working with the shelter crew. It started as an extra job. It quickly became a little more than just a job. It was a place that showcased the dark side of some humans, with abuse they committed towards animals. There is always a bright side. It also introduced me to some pretty hard working, caring people that worked their butts off and helped those same

Ahhhhh…..a nice relaxing day off. I accomplished many things. I called Medicaid, to get some answers. I got the run around with that, which I expected, but I also got answers. I did some yard work. Finished packing.  The day turned stressful when I was outside gardening. Jiminy was following Penny around…with his one eye. I saw Penny head around the back of the house. I saw Jiminy follow her. He stays close.  I saw Penny come back around the house……..waiting…..waiting….. no Jiminy. I get up to see where he went…..no Jiminy. I start to walk around the house, scanning the yard for him. Nothing.  Jiminy is a dog that follows close and barely gets 5 feet away, unless he follows Penny. He’s close to me, or close to Penny.  I knew a hawk didn’t get him because I had scanned for hawks when we were coming outside. Also, there was no noise. No scream, no bark…..no noise. I then began jogging around the house calling him. I looked in our pond, I looked in the neighbors pond. I looked in the road

 Life is better with a dog….or a cat….or any sort of animal. At lunch, I came home to walk all the dogs. The sun was warming and cheerful. The dogs happily sniffed, chased things, walked around and enjoyed nature. Poor dumb Penny was eating birdseed. She is going to crap out a sunflower if she keeps this up. If it weren’t for the dogs, I would have missed all the bees pollinating my flowers. Good ol’ honeybees. I would have missed the frogs singing in our pond, loudly I might add. I would have missed the fact that my hyacinths are coming up and getting their color.  After work, Avery and I took the dogs for a walk. Jiminy will likely never be a leash dog. He was horrified at that process. He liked the satchel I got for him. He also got to follow along behind us on a less busy road. He doesn’t stray. He is a follower, not a leader. Ethan worked on his car and homework today. He was pissed when I told him about going to NYC in 2 weeks. Tomorrow I get to fight with Medicaid as they are de

Paul and I went to get our taxes done. As the waiting room was filling up, we sat next to an older gentleman with the volume on his phone on EXTRA loud. This drives me NUTS! I have been feeling on edge the last few days to begin with, and this is tipping me over the edge. Beep, beep….beep. Over. And. Over. Turn the damn volume down sir! Why do people do this? If you are in an office, please turn your volume down! Why does it have to be loud enough for the dead to hear? Another lady had her volume on extra high and blasted a song. She quickly turned it off. Poor Paul had to sit next to me with my chaotic funky attitude swirling around. Sometimes being an adult is super boring. Getting taxes done….ugh! Boring. I didn’t schedule this appointment. If it were up to me, it would have been done in January. Paul likes to make me sweat a little and wait until last minute. There were these two fun ladies in the waiting room. Their phone volume was appropriate. They were talking quietly back and

I spent some good quality time with the family today. I enjoyed it. Avery and I went to my work. Afterward, we went to the diner for breakfast. I cherish this time with my Avery.  We decided that we should stop home and pick up the dogs, put them in their warm clothes and take them for a walk. It was windy but we exercised them with a brief, 15 minute walk in town. They loved it. Jiminy at one point was protesting as he was cold, but he survived. Everyone napped well when we got home, even Avery. Paul and I chatted over drinks,  for a good almost 2 hours. We don’t get to have much conversation with just the two of us. It was nice. Ferguson joined us. He was the lucky dog. All in all….it was a good day. Now….each day will be one day closer to vacation. 

I completed 47 hours of work this week with another day to go tomorrow.  It will likely be only an hour or two.  Monday will be the start of the following work week. But when I got home today, I felt tired.  My limbs felt heavy.  I started to travel down the mental path of  “This is crazy. You are missing out on so much. You are missing out on your kids lives.” It’s the age old “Mother’s guilt trip” that we like to take ourselves on. Today I took the scenic route on the guilt trip. Once I realized that I was bullying myself 😳, I changed the narrative. I reminded myself that I have been waking up earlier so that I can have my morning coffee with Avery before I leave for work. We both enjoyed that, and sometimes a dog is included. I also have seen a dramatic improvement with potty training with Jiminy. Good job little dude!  We had a nice family meal with Nana and Papa yesterday. Wednesday we had a nice visit with Mema. Plus….on top of all those things…..I worked a 47 hour week. I am ki

Finally. It’s Friday. This week has been longer than walking a 100 mile road. While I have to work both Saturday and Sunday, at least the days are shorter and I will get a little family time. I need to finalize things for our trip. Paul is being left in charge of the animals. They are pretty self sufficient, just need to be let out and fed…..except the baby. Jiminy needs a bit more work with all the potty training we are doing. Avery and I were talking about the huge improvement we have seen over the past week. All poops have been outside. He still has accidents at night. But during the day, as long as he is let out, he does well. Ethan went to work after school. He had a long day but seems to be juggling it well. He acts like he is juggling it well at least. He really LOVES his co-workers and job. Tomorrow is a big day. The Little Speed Shop is organizing a “Fun Run” to Watkins Glenn International Speedway. This is where car enthusiasts meet up and can drive their cars ON the racetrac

I am a realist. I know that Ethan is going to have medical ups and downs for the remainder of his life. When he is up, he needs his space, privacy and the ability to, within reason, do what he wants. Right now, he doesn’t have several appointments a week. This will be an opportunity for me to check things off my bucket list. Savannah is on my list, as are other places. I am learning that life is just too short. I have my own bucket list I want to accomplish. I also know it’s only a matter of time before Ethan needs more medical intervention….I will be at his side, so I got to work on my bucket list while I can. If we live modestly, we can budget for these trips. This can be done. This will be done. I am excited to live life again. Today (because I fell asleep before I posted this) I work a 14 hour day. So I won’t be posting tonight. 

I took the advise of my wise friend, Melissa. Today I looked forward to my walk around the yard to assess my perennial flower growth over the past day. I like to do this with 4 dogs with me and sometimes Avery. The daffodils are starting to get their yellow color. And will likely bloom within the next few days. I really like nature. I have often thought that with so many flowers and land, that we really should haves hive of honey bees. It would help the environment and that could be my way of giving back. Ahhhhh someday when I have the time to learn about how to care for them. I am getting excited about the trip Avery and I are taking next Friday. We are going to explore the city of Savannah, Ga. we have never been there and hear it is beautiful.  I feel like I missed a lot of time with Avery, that I will never reclaim. What I can do is enjoy her in the present moment and make memories with her now. We are doing a hop on, hop off bus tour to see the sights of the city. We have a parano

Today was the Monday-ist Monday. It was long (That’s what she said ~Michael Scott). I stood all day long and my body ached.  Ethan was working on applying a “Wrap” to something in his car. He was excited about it. Sometimes I just watch him and have an overwhelming sense of gratitude for that moment. Avery and I chatted while we watch all the dogs playing. We celebrated Jiminy’s success at going potty on the OUTSIDE of the house (ha ha). Paul was a busy beaver working in the yard when I got home from work. He later joined us all in the living room. I enjoy these candid moments knowing that the present is a gift. It makes all the annoying things that happened today, fade away into the back ground. It’s so easy to get caught up in the hustle and bustle of day to day activities. Sometimes it is good to slow down and reconnect with dear friends. I am looking forward to seeing some of my college friends in June. Covid really robbed people of time with those special to them. This will be a t

Therapy is in the air. Paul starts tomorrow. I am hoping that he is helped in the way that he needs to be helped. Change starts when we reflect on ourselves and find areas we would like to improve upon.  I have areas that I “practice” improving on. I practice daily. Some days I feel I do well. Some days I could have done better. Some days I just don’t care and you get what you get. I was introduced to the term emotional intelligence while I was in NYC (for the first transplant). Emotional intelligence is the capacity to be aware of, control, and express one’s emotions, and handle interpersonal relationships judiciously and empathetically.  I strive to grow this but I have some days that are better than others. I am not a fan of the rain, mud and sleet. No thanks. Please bring something else. 16 paws I have to wipe multiple times a day.  All the dogs got a bath today. It’s a Sunday tradition. I was their bodies and bedding whether they need it or not. But they typically need it. Plus th

Ethan had to go to the lab this morning. One of his tests is a urinalysis. He wakes up and goes to the lab. Today the wait at the lab was about an hour and 15 minutes. He had to hold his first urine of the day for well over an hour and 15 minutes. Poor kid. Ethan worked on his car while Paul and I went to Eli Fish brewing company with some good friends. We had fun! Little Jiminy is healing. He got to play a little bit today. He had some sunshine therapy as did I. I was very thankful to see my flowers coming up. I love hearing the peepers in the distance. I even heard the flutter of a woodpecker slamming his face into a tree over and over again. I could do without the mud…..

Ahhhhhhh….April Fool’s day. From one prankster to the next, a fun day indeed. Jokes on me……I am continuously getting pranked because someone got their grip on my phone number and I am receiving some salacious offers from random phone numbers.  Our morning started out as a prank, right from the universe. If I back it up, as I was talking to Paul about why Jiminy should join our family, and why we don’t really have “four dogs” it was more like 2 and a half dogs, Paul called “bullshit”. He did however, let me just do what I want because that is much easier for him. Fast forward to this morning. I took Jiminy, his busted eye and sore man parts outside with the other  dogs. He refused any potty training this morning. As I returned him to his crate, he must have squeezed out a small turd, a stealthy turd, on tot he floor.  As I walked around in a non-caffeinated state locking everyone back up in their designated areas, I somehow stepped in poop. I walked around with a loose turd on my shoe,