Ethan’s Journey

​Ethan had his dermatology appointment today. He doesn’t mind these appointments because they seem to go quick. He has to go every 6 months forever.  He likes me to go to these appointments as a second set of ears. His rejection medications significantly increase his chance of developing melanoma, basil cell carcinoma and squamous cell carcinoma.  She goes over his body with a light and magnifying glass. Last time they removed a “spot” that was suspected of potentially being cancerous. He left work two days in a row early. Likely putting him under the $25 per week that he made over the threshold for full medicaid coverage. Good grief! He has had a good week with his dentist appointment and dermatology appointment walking away with good news. He needs good news. No suspicious spots today! Yay! Work today felt like babysitting. I sent out several emails to people that weren’t doing what was expected of them. Please just do your job so I can do mine. Is that too much to ask? Sara...

​Being home comes with a list of chores a mile long. Yuck! I spent the day working and making lists of my “MUST DO” list before I leave again. Being an adult is stupid. Ethan and I began the pages of paper work for medical financial support from the hospital. We have to submit tax documents, paystubs and hope that it is enough. All because he makes $25 a week too much. He still has not called to make a payment plan to repay the $12,000.00. It is difficult to do so when he works 7:30 -4:00 with a half hour lunch. No one answers the phone in a half hour. Their hours are 8-4. So that is not convenient. They won’t talk to me to set up a payment plan, even though I am his advocate. Dumb. We are trying to do the right thing, but hitting roadblocks. Ethan went to the dentist today. His gums are healthy, he has no bone loss, he still has his wisdom teeth but so far they aren’t causing a problem. He had one cavity caused by a small crack in the tooth. He gets that fixed in a few weeks and then ...

​Finally came home from the lake with the dogs. They were exhausted. A week plus of lake life is so hard for them! They all slept on the way home. Part of my drive was spent trying to figure out what my grocery list should be this week. The other part was catching up with my Mom on the phone.  She just closed on her house last Wednesday. She is done being a home owner and has embraced senior living. She is doing all sorts of activities. She and Gene are still trying to make their place their own. Still hanging pictures and getting things situated. Moving is such a process. This week’s activities were based around summer camp. My Mom and Gene participated in campfire. They also chose their seats wisely. Others didn’t fare so well and they were choking on the smoke. I am already excited for the weekend.

​this morning Paul was peeking at someone at the end of their dock. We were trying to figure out who the person was. “You can’t just use binoculars and become a peeping Paul on the shoreline They can see you.  It looks weird!” I said. “What else are binoculars for?” He asked. “Unbelievable! You look like a creep.” I chastised  This moment was brought to you by Sarah. Turns out, they weren’t even Paul’s binoculars. They were the neighbor’s. The neighbor recognized them and asked for them back after seeing our Facebook post…..hilarious! Klepto Paul! We went out on the boat and went swimming for a while. The water really warms up in the afternoon.  Sarah and John’s daughter, Brooke,  and boyfriend went out on the paddle boards. We then decided tubing was a good idea.  Sarah, Brooke and myself went tubing. I was nervous but Paul promised to go slow. The three of us were on the tube. Things were going fine for the first minute and a half. Then Sarah fell off. We circ...

​Sarah and John were providing pork for dinner. Sarah told John that if the pork he prepared for dinner was bad, they were never going to be allowed to come back. “That’s a lot of pressure.” John said. There were all sorts of jokes about John preparing his meat for dinner. Immaturity at its best! A while back, Moe got into some donuts and devoured 6 large donuts…besides a sugar high, he didn’t have any intestinal upset. We were grateful he didn’t. These donuts showed up this weekend. Moe did NOT help himself. One time in a row. We went out on the boat which is fun. Sarah and I floated on Diane’s tube. We floated and stayed cool without being totally submerged. We were not graceful getting into in and I am glad no one has a video. We did suffer some heckling from those passengers on the boat. It didn’t bruise our egos at all though. Sarah took her dogs out on the paddle board. They were both with her. I want to try this with Penny but  I am note sure if she will panic. We ate dinner...

​I talked to Avery today. She had me cracking up.  We talked about ridiculous things and laughed about them. Paul arrived this morning. The dogs were so happy to see him. He had to sit on the couch with them for a little bit just so they could all sit on his lap at the same time. Work seemed to snowball into a mess. It casted its web in my day. It is a good feeling to snap the computer shut on a Friday afternoon. Sarah and John arrived with their dogs. I took Moe, Jiminy and Penny for a walk up the road. Ferguson was sleeping. Penny was barking so much at Sarah’s dog that she earned herself a sedative snack. Moe and Jiminy walked nicely with Sarah’s two dogs. Everyone minded their business and got along well. Yay! Today was work frustrations sprinkled with communications from the transplant team and social services. Ethan’s blood pressure is creeping up which is a side effect of one of his medications. His team increased his dose of blood pressure medicine.  He also had a chan...

​ I think about all the hellish mornings spent trying to be the first one to the shower to reduce the amount of hair found in the drain at the hospital. Just wanting a clean-ish shower. Worrying that if I wasn’t the first person, the air could be contaminated as I removed my mask for 15 minutes a day to clean myself. Worrying I might bring Covid back to my healing kid. My morning now is so much better. I told Avery for years I wanted a remote job for my sanity. I feel like I have hit the jackpot. I enjoy work. I enjoy it even more with a beautiful and peaceful office. I am so grateful. Ethan made a YouTube video where he shared his feelings about how things have gone for him the past 6 years. His constant stress about his health, the constant worry he isn’t as far along as he would like to be…. While I don’t love his excessive use of the F  word, he expressed how he feels and the challenges he has faced from his perspective. https://youtu.be/hj4Usa_yxTk?is=1KPVGei12-we_tFs He recog...