Ethan’s Journey

 I woke up this morning with some sore muscles. I must have really worked my back muscles sitting all day yesterday. Nothing else hurt though. I used the heating pad and alternated between sitting and laying to work.  I made sure I stayed moving periodically.  I told Ethan I had time in my schedule tomorrow morning if he wanted me to go with him to the lab. He didn’t fight me on it. We were going to go today but the timing wasn’t right with his pills. Since it is a timed test, we pushed it off until tomorrow. Fine by me. It was cold out today. It will likely be cold tomorrow too. But that’s fine.  I did enjoy watching the snow fall today. It is so pretty. At one point it looked like a Bob Ross painting out my back window. My other bright spot was that I stood up from the couch. I looked out the window and there was a fat Blue Jay just sitting in the tree. The tree branches were decorated in snow making the blue….especially blue.

  I didn’t have as many steps today as I did yesterday. Today I either stood or sat to work. I tried to remember to keep correcting my posture throughout the day. I had enough time to make a double batch of Shepard’s pie. Yum! Ethan went to work today. He has a credit card and is building up some good credit. Some of the things he wants to buy for his race car are expensive and go over his $500 limit. I let him use my card but he has to have the money. He always does. The past couple of days he has been trying to order a part but the company keeps declining the purchase. I am sure it is from a transposed mistake of some sort.  I called the credit card company and they are all set on their end. They said it is the actual store that is cancelling the transaction. Tomorrow Ethan will be home. I told him we can work on it and see what the issue is. Ethan is frustrated with this issue because we have been trying different cards and it still isn’t working. I texted him tonight to remind him

 Avery took me out today. It was the first time since my surgery. I asked her to drive my car because her car may have been more difficult for me to get in. We got into my van, and the wet rain fell on is. Ewww! Maybe I should have stayed inside. We got into the car and the seats were COLD! She turned the car on as I feverishly reached over to turn on the seat warmers.  Technology has spoiled me.  “Oh my god these seats are so cold” I complained. “What is this…the 1800’s?” I know I was being dramatic, but I do enjoy a warm rump at winter time. We laughed. She carted me around as she was trying to find washers for her chemistry experiment.  We also stopped for a good thrifting experience at Goodwill.  I was TIRED when we got home. I took it easy for the rest of the day. I will see how things feel tomorrow. Paul made it home from snowmobiling. He had fun. I think he is a little crazy he rode  over 300 miles in a day and a half. 😱 Our donor family was on my mind heavily today.I don’t kno

I woke up this morning and Paul had already left to go snowmobiling. I checked the cameras and he had let the dogs out. I decided to stay in my warm cozy bed and watch TikToc’s for a bit. I was cracking up. When I went to get out of bed, I was delighted to find that my soreness was less than yesterday. Yay! It is nice when I can feel measurable results. I made the decision that I will continue to try and either meet or exceed my steps from yesterday. I am concentrating on my posture.l and retraining my muscles to remember what that even is. I took a shower and thought about how awful it was to shower laying down. Those days are gone. I was able to enjoy the warm steam and not have to rush through it to make the pain stop. Yay! So far I was winning my day. I had a friend come over and visit and she brought us dinner, that was so nice. It was also nice to see her while I was sitting and not laying. Avery and I binge watched a show and relaxed and I considered it “healing time”. The dogs

 My muscles were sore this morning. Like I hit the gym yesterday. I assure you that I did not. I was able to rotate between sitting, standing and laying down while I worked. I was able to sustain sitting and standing longer than yesterday. I am pretty sure my muscles are so confused. They had settled into their Bon Bon eating, tv watching life. Every so often I would change positions or I would take a couple laps around the house. Paul made it home last night. I had lots of jobs for him to do. I had a productive day at work.  After work, Paul and I chatted and had a drink while we watched TV. We giggled at the dogs being silly. We then finished the night watching an old episode of Top Gear. I like the older ones because I think Jeremy Clarkson is pretty entertaining. He does make me chuckle at some of his one liners. Every day I am making progress. Woo hoo! I had to tell Ethan he needs to get his bloodwork done again. He immediately responded “No, I am not doing it.” So I will keep rem

 Today went well. I sat up a little bit longer each time and made sure to get up and move every 1/2 hour or so. I felt good and didn’t feel like I was over doing it. Every day I have a touch more energy. Slow creeping baby steps. I did have a moment when I spoke to the doctors office where I became frustrated and slightly enraged.  I have these steri strips on my back. They are layered on. Some over the top of others. It’s not an easy pull it off with one motion kind of job. I knew it was recommended to take them off today. Was it really going to matter if I waited one more day for Paul to help me? According to the nurse, yes! Ok. Fine. I tried to explain that these strips were really stuck on there good. I asked if they could stay on an extra day or so. She made herself annoyingly clear that if I left them on longer, I could get an infection. Her response to having them stuck on really well was, “just rip it off quick, like a bandaid.” Is she drunk? When I told her I was having troubl

I made out well sleeping in my own bed last night. I woke up even less sore today than yesterday. I am finding I can reposition myself without significant pain. This is great!  I still can’t sleep on my side, but baby steps. Tomorrow I can work on removing the steri strips from my incision. Today I alternated working laying down and sitting. I also got up and walked around a little more. My legs feel so heavy. It’s like I have cinderblocks on my feet. I have to consciously remember not to shuffle around like an old granny. I am afraid of slipping or falling. Any sudden movements seem like a terrible situation and I want to avoid that at all costs. Thankfully I don’t have to go outside for anything with it snowing and slushy out.  The steri strips seem like they are causing a lot of the pulling at my incision. They are supposed to come off then. I will either have to wait until Paul comes home or have one of the kids pull them off.  I was able to cut Ethan’s hair tonight (which hasn’t b

 Day 5 - I went ” back to work” today. Let’s be clear what this looks like. I still lay flat for the majority of the day. I do get up to let the dogs out and to eat. I did take one of my meetings in the sitting position, but about 7 minutes in, I laid back down. I have lost my core muscles to sit for any real length of time. Little bits each day will help.  I did notice small signs of progress. I am able to stand up from the toilet without making a horrible groaning noise and bracing myself on the wall and counter top. Progress! I also was able to stand up just a bit easier from the sitting position. So while it sounds impressive that I am “back to work”, it really looks the same as the past month I have been at work. So, it’s really not that impressive. I am happy to report I didn’t take any pain medication today. 2 days in a row. I am amazed with how the human body can heal.  I keep thinking about when Ethan sat up for the first time after so many weeks of being intubated and how dif

 Day 4 after surgery-while I was still sore this morning, I decided to skip the pain medication. It wasn’t awful. I still have to go slow from sitting to standing, but I am able to move around and do things.  I got up, let the dogs out then fell back asleep for another couple hours. This is unheard of so I must have needed the rest. Right now, if I am tired, I nap. I am trying to take it slow and steady. I find I can kick ass better if I am slow and steady. Paul still has to put my socks on for me. I can’t quite bend that far. I try every day but today just was not the day I could put my own socks on. Maybe tomorrow? I really have done exactly what the doctor has ordered….no chores. I start back to work tomorrow morning. The doctor said wait 6 weeks….but I think 5 days is long enough. I also might lose my mind if I don’t have something to entertain my brain with.  I did schedule multiple breaks throughout the day tomorrow and for the rest of the week so I don’t over do it. Keep moving

Today was another day of mostly rest. I did get up periodically and walk around or sit up. But I laid on an ice pack off and on all day. I decided to do the foundation work of planning a trip to Sedona, Arizona for 2024 with our friends. I like the planning stage. I like trying to price everything out, make a spreadsheet of several ideas of things we could do and then narrow down what we want and don’t want to do. Then it gives us a budget to plan on. I am a bit of a nerd. Auntie Julie came over for a visit (Paul’s sister). It was nice to see her. Ethan came down and visited with her. He didn’t really say much but his actions count! Paul was super bummed that the Bills didn’t win. They had a good season. I am off of work tomorrow, and go back to work on Tuesday.  My legs are sore. Every-time I stand up from the sitting position I can feel how out of shape they are. They try to communicate that the rest of my body is too heavy for them to support. I call bull crap! My bright spot was ha

I woke up a bit rough today. I was so sore. I took small and shuffled steps to let the dogs out. But I was able to stand without my leg hurting. I found myself in the kitchen. Just staring at the coffee pot. I don’t know how long I had been there staring at it, but I asked myself “what are you doing?” I made some coffee, let the dogs in and laid back down. Oooof! Very sore. As the day went on, I found there were a lot of things that were difficult for me to do. Standing for too long left my legs wobbly.  Going up the one stair from the den to the living room was difficult as I have not done stairs in a month. All those muscles are gone.  Trying to roll from my back to my side, they cut through the muscles I use for that motion and it is almost impossible to turn on my side. At the last minute, Paul decided to stay home from his fraternity weekend to help take care of me. I was very thankful for that because there have been a few times I have needed help getting off the couch. I had Pau

I woke up this morning expecting some significant pain. When I sat up, I was delighted that the crushing leg pain was not there. While I did have a little difficulty going from a laying to sitting position as well as a sitting to standing position, I could sit and stand far more comfortably than I could Yesterday morning. I do have soreness at the site of the incision which is to be expected. I have this strap on I use. No! Not that kind of strap on. (Dirty mind) this is a pouch that Velcro’s around my waist that you can slip ice packs in. My medication makes me a slight bit loopy. That’s ok. It does help me stay comfortable. I spent the morning visiting with my mom and catching up on work emails. However, I didn’t actually “work”. Paul left this evening to help one of his friends. The fire place needed more logs on it. I asked Avery to help. She immediately loaded up the fire place and the fire started to burn hot.  Avery and I walked away. Avery was closer in the kitchen closer to th

The instructions for surgery are kind of funny. I was supposed to shower this morning. It was written down that I should brush my teeth and use deodorant. EWWW! They had to add those to the pre operative instructions for a reason. Some ninny decided to arrive to surgery with their mouth full of bacteria from the night before. Why wouldn’t you brush your teeth? Yuck!  The direction was also to apply deodorant.  I can see where someone may get confused when it said to avoid lotions and perfumes.  Ethan was my driver today as Paul was working. Ethan dropped me off at the door and had to meet me in the surgical check in area. This meant I had to stand in line to check in at the check in desk, walk to the elevators, wait for the elevator, walk down a hall and then stand in line to check in when I got to the surgical check in area. I was DYING! Woah! It was excruciating.  Ethan had to park the car and then meet me at the surgical check in area. Neither one of us had ever set foot in that par

I read the news this morning. A local man was caught cyberstalking a local woman. He bullied her with nude photos that he sent to her family, place of employment and friends. People are absolutely crazy.  It made me thankful that I have a small bubble. It also leaves me with question of why? Why would someone do this to someone else?  I also thought….who has this much time on their hands to put into sabotaging someone else’s life. What level of hate and mental illness do you have to have? I thought about all the people I hate. As I thought about it, there really isn’t anyone that I “hate”. I have people that I dislike, or find insignificant, but not hate. I consider that a bright side. I am not saving a space in my heart for that negative energy. I got my surgery time for tomorrow, 9:45 am. No coffee for me in the morning. Sad face. I will survive if it means I can WALK comfortably tomorrow. Plus I will have narcotics to help with the headache I will likely develop from lack of caffein

I sent my friend a little something because she was having surgery last week. It was meant to make her smile. It was also something useful too. She received it last Thursday. Fast forward to yesterday. I also received her gift in the mail. I received the gift that I ordered for her, in the mail. Did I make a mistake? She received the gift. Why did I also receive the gift? I was so confused. I was talking to one of my previous work friends today. She asked me if I received anything in the mail yesterday. Ha! Mystery solved. She sent me the same gift, that I sent my other friend. So funny! Great minds think a like. I enjoy sending things to people. I like knowing that I share a smile or laugh with them. When I received the gift, an amazing smelling candle with an even better name, it was wrapped with warmth and it did make me laugh and frankly feel loved. Small gestures can be much bigger to the receiver of the gesture, than the giver.  I passed my Covid test! Thank god! I didn’t even st

Phineas has been very vocal and whiney the past several days. We have tried to see what the issue is. He has been out. He has water, all of his basic needs are met. I figured it was because he hasn’t gotten the exercise he had gotten pre-flatness. So I have chalked up up to his 13 plus years of life and no exercise. This morning I got up and the house was quiet. I went to the bathroom and when I came back, Phineas was laying in my spot on the couch. He is not allowed on the couch. He knows this. Especially not when he is not getting his weekly baths. I have super nose and I don’t want my couch to smell like dog.  I looked at his beautiful brown eyes that looked up at me and his sad “oops I forgot” expression. How do you get mad at that. I moved his bed next to me on the couch. I prewarmed his bed with the heating pad, and prewarmed his blanket. No. He is not spoiled. Of course he is spoiled. He has been a trusted friend and child safety officer for almost his entire life. He snuggled i

I woke up this morning feeling much more rested. The morning was spent flat with the dogs being silly. Paul, Avery and I spent a while watching them and laughing at them.  Paul spent the morning cleaning and doing chores, since I am pretty useless. I did help make some chili. I also figured out how to make Knox blocks without being upright for long. They make for a light and yummy snack. Avery hung out with me on the couch for a bit. Ethan stayed mostly in his room. Paul watched some TV for a while and then went to work on his car. My bright side….I am hoping this is my last flat weekend. Tomorrow will be my Covid test, then 4 more days.

 Today was good. I am very sleepy.  My eyelids are heavy. I just need to go to sleep.  5 more days.

No matter how old I get I will never under appreciate the beauty of freshly fallen snow. I love watching the big flake slowly floating down. They always have a little shimmer to them like they are made of teeny tiny diamonds. I love how the trees collect the snow on the branches it is so pretty. Today I had my monthly pharmacy call to make for one of Ethan’s medications. If I made Ethan do these calls, he would just not do it and forego taking it.  It’s kind of an important one, so that isn’t an option.  This medication comes from a specialty pharmacy. A specialty pharmacy has medications that regular pharmacies don’t carry. The specialty pharmacy is for people with complex and chronic medical conditions. Ethan should be their poster child.  My monthly phone call usually takes about 30 minutes. To be able to talk to this pharmacy, we had to have Ethan give verbal permission over the phone and submit a form. Each call, they go through a series of medical questions to verify address, dat

Avery has made her final decision and will be attending SUNY Brockport. She applied for Honor’s College which will make her eligible for the Prometheus Scholarship. This is for first year students and awards $6,000 to be used towards her housing. It is renewable all 4 years she will be there as long as she lives on campus. Woo hoo!!!! Brockport is the college her Great Grandma, her grandma’s on both sides and her grandpa went. Now she is going. Avery has done quite well financially planning on how to get the most bang for her buck with her 529 plan. She is looking at local scholarships to apply for. I almost made it through another week completely flat. Thankfully I was busy at work. I have fulfilled my hiring quota for the month with my hires. My territory will be changing soon….again. That makes it difficult because I have established relationships with clinic managers. I really like them too. I am embarrassed to say that I had to learn where my central territories are. I am not grea

I haven’t seen Ethan all week. He comes out of his room long enough to go to the bathroom, get some food, and occasionally get wood for the fire. We exchange hello’s. He is so guarded with his feelings he just doesn’t want to let anyone in. He does talk to his friends regularly via text. I am thankful for that. He continues to work, it’s their slow season, so not as much as he used to. He is worried about supplementing his current job because he knows the slow season will be over soon. He continues to go to therapy, I am hoping it is helping him. I can’t have any contact with the therapist because of HIPPA and he is an adult. I know this will pass. I do miss him. When he does smile his whole face lights up.  I received yet another call today from the hospital regarding charges from December 2020. They don’t have the insurance information on file from 2020….and they keep trying to bill Ethan’s current insurance. Ethan’s current insurance immediately poo poos the charges because it is no

Paul got home from work today and tossed a package my way. I looked at it trying to remember what it was that I ordered from Amazon in the last 1-2 days. Nothing clicked in my  rain. I opened the package and inside was another package that was clear, with what looked like a freeze dried pillow or stuffed animal compressed inside, with two black eyes staring back at me. “What the hell is this?” I wondered out loud. I tried to open it with my hands but the plastic freeze dried package was sealed tight with pressure. I had to cut it open carefully so I didn’t damage the contents on the inside. As soon as there was a perforation in the bag, the object began to take shape. It was really soft. I removed it all together from the packaging and realized it was a plush penis, with eyes. It was cute. I was laughing at the idea someone would have taken the time out of their day, to think of me long enough to order and ship me such an exotic gift. I knew at this point that one of my friends had sen

Today was a crazy day at work. So busy. I am one person shy of meeting my January goal for hires at work. It’s only the 9 th. Knock on wood! I have been able to remain comfortable laying down with the steroids I was given. My neck started to bother me so I switched out my pillow. Otherwise, I just keep plugging along. Jiminy kept me company all day today with frequent visits from Ferguson. Ferguson gets pissed Jiminy though.  Then he runs away all grouchy.  I am tired and am going to sleep well. I also had a margarita while I chatted with Paul tonight. Then he left at 8:45 to go help his friend with a car issue. He is always helping someone and he loves it. 10 more days.

I think I am becoming addicted to work…like a gambling problem. I get excited everyday for my indeed leads to arrive in my email. How many interviews will I have this week? Maybe it’s because I literally can only lay on the couch and work. Paul got me out of the house to blow the stink off of me today. We went to a friends house to watch the Bills game. I of course, road in the trunk. I love that our friends just include my flat self it the activities. It is always nice to see a different ceiling now and again.  The Bills won, and that was super exciting. My favorite thing that happened was sharing a good laugh with friends about riding in the trunk. I was in the trunk of the van as we were leaving, the door was automatically closing and I was just waving away at them, as they waved at me until they disappeared behind the door. It’s like a bad movie. I know this is temporary. That is why it is funny. Avery spent hours doing her homework tonight. Ugh! She was watching Hamlet, then worki

We received an Email from Ethan’s donor family tonight. This has been the highlight of our year so far. I can’t imagine how rough the holidays are for them. Nicole passed away right before Thanksgiving and Christmas in 2020.  I am so warmed by them reaching out. They said that Colie or Cole as they fondly call her, had a need for speed and spent a lot of time on 4 wheelers and things that go fast.  Her dad is big into Toyotas. She was a big hugger, which is funny because for a while Ethan was hugging everyone. Calling them in his room and hugging them. It is so heartwarming to hear about her and what she was like. I have read about muscle memory and recipient’s taking on some mannerisims of their donors. It has never been proven 100%, but I do believe there was some sort of change that I saw. Ethan didn’t want to be present for me reading the email. He didn’t want anyone watching him for a reaction. He is so guarded with his feelings. I emailed the letter so he could read and process i

A small moment in your day can be a large moment in someone else’s day. I was on the receiving end of a really nice compliment (and work related). I sooooo appreciated it. The person that told me said it because they knew it would make my day. It took minimal effort on their part. It meant the world to me though.  It made me stop and think about how can I forward this onto someone else? Anytime I notice something I like about someone, I try to tell them. We should all be doing this. “Pay it forward positivity”. It could have the potential to become contagious. As soon as I shut my eyes, I will have 13 days. Happy birthday Melissa! 🎂🥳

 I made it through my bellyaching phase yesterday. My pitty party is now over and I can regularly attend my life in a somewhat productive way. My migraine is gone and I took enough medication to sedate a grizzly bear (all within the prescribed dose, don’t worry) just to get a good nights sleep. I reached out today to see if there was anything else I could do or take to manage the pain. I quite literally begged for a solution. I asked for the cortisone injection to get me through until surgery. Hell triumphed over me yesterday and I don’t like to lose. I was able to get ahold of the PA at the Dr.‘s office. We discussed a cortisone injection but most pain clinics are booking out months. With that off the table, I got a stronger dose of steroids to help reduce the inflammation (since NSAIDS aren’t so nice to my kidney). Avery picked up my medication for me so that I could start it right away. She is such a good kid.  I have my pre-op scheduled. Ethan is taking me to that. I told him he co

Day 14 of being flat. Waiting. Why is it so hard? I need something to look forward to. It is a strange place to be to be excited for surgery. I can remember being excited to donate my kidney. It meant freedom from dialysis and a new life for Ethan.  I am excited for this surgery to happen. To be able to sleep in my bed, cook, keep the fire going….little everyday tasks I have always taken for granted. I never really thought about how I would be excited to do my own laundry or drive or sit. I made another call to the scheduling center this morning. I left another message. I waited another couple hours and sent a “my chart” message to the doctor to try and exposure. I while later I got the call. My surgery is on the 19 th. I begged for a sooner date. I begged to get on the cancellation list. So it will be another 15 days. I am frustrated. I am let down. I am feeling sorry for myself and trying to embrace this crushing pain for another 15 days. I am trying to figure out HOW to live with th

 Paul loaded me up in the car, flat, and we traveled to Canadaigua to my appointment. It is about an hour or so. I was able to login to work on the way which still blows my mind I can continue working with the right tools. It is saving me from going crazy. Paul asked me if he should drop me off or if I could walk in from the parking lot. I said “drop me off or you will have to give me a piggy back ride”. Paul dropped me off, like cargo, and I hobbled into my appointment while he parked. I knew I would experience the crushing and stabbing pain until I was able to lay flat. Mind over matter. The pain did not disappoint as it attacked me with every step I took, creeping farther into my foot. I had to fill out paperwork and did Lamaze breathing as I completed that dreadful task. It was sloppy. I had to accept that. I am having to accept a lot of things I don’t like these days. Like being dependent on everyone. I hate that. I want to be able to let the dogs out when I think they need to go

 Tomorrow is the consult. Finally! What will my fate be? My worry is it is going to be weeks without resolution. Another long and agonizing day in and day out in a flat state. Ugh! I am getting so tired of it. I am worried I am going to get a bald spot. I know that is the least of my worries but it would suck! I wasn’t overly driven today. We had our one last day all together in the house before going back to the grind. Ethan spent the day doing Ethan stuff. He was outside I suspect in the garage. I heard some banging around in his room. Paul puttered around because he can’t sit still. He took down the Christmas lights and tucked them away neatly for another year. He has been running around trying to keep up with tasks that I have not been able to do. He praised our vacuum cleaner and was telling Avery and I how wonderful it was until he had to change the bag.  A few unfavorable “mama Mia’s” slipped out with some unfavorable hand gestures. Then he was able to work it out and mended his

Avery is my first daughter. Her friend, Rachel, is my second daughter. I have been lucky to have met Rachel and get to know her over the past couple of years. She is quite the artist. She has a beautiful soul filled with kindness and love. She has blended so well with our family, I have wanted to keep her. She made the most excellently executed Christmas card for me. I am not sure I could love it more! ❤️  I was able to almost finish the book I was assigned as part of my therapy. I read a very interesting section on teens and anger this morning. It laid out reasons why teens become angry and how miscommunications can lead to this situation. It actually made sense and I could connect several dots of how I, myself, have acted that may have made Ethan put up walls. It was quite interesting. I am close to being done with the book and I have a few sections I want to re-read. My Sister-in-Law also found this interesting article about the stroke patients and how strokes change change their br

 I had someone say to me “I bet you are glad this year is over. Too bad you are in such bad shape with your back to start the new year.” As I reflect back on 2022, we did have some trying times. We are continuing to work to be able to support Ethan in the way he needs it and work through his PTSD and healing. We are grateful for the opportunities that have come our way. Avery exploring colleges, being able to camp without dialysis, my new job and of course little Jiminy. Yes, my back has not been cooperative. It has been a painful ordeal. I choose to be thankful I was helped by a friend to receive treatment sooner. I consider it a reminder to take care of myself a little better. But this will NOT set the tone for my 2023.  I am giving my Hell the double middle finger and going out this evening, flat. I will lay flat and enjoy a different ceiling for a while tonight. I will also go and celebrate Christmas tomorrow with my in-laws. Flat….but I will do it. I am going to have fun and share