Ethan’s Journey

 Today I played the game of is that my hair touching me or a spiderweb, bug or spider. I was on a call at one point, looked down and saw a ginormous spider on my leg, screamed and punched it (myself) resulting in the lady asking me “is everything ok?” I looked like a drug addict with my flailing arms, punching myself and yelling out like a dying duck. “Everything is fine, Donna.” I faked! 😬 I rotated the dogs outside today. I really enjoyed seeing old man Ferg sunbathing himself. He had a smile on while napping happily in the sun. Our friends made it to camp with their two young kids. The kids very much remind me of Ethan and Avery. They find joy in little things, they are smart and can carry on a wonderful conversation. I learned all about Godzilla. I found some glow sticks and broke those out. They were a hit!  The men got into the Natty Daddy’s and will remember nothing by morning. It was a good campfire. I love weekends. I like forgetting work and just existing in the mom...

Ethan was filling out paperwork today for a possible apprenticeship that he may try. He is not sure he will be able to do it because it is quite labor intensive. With his extra bills of medical costs and paying back SSI, he has to make work a priority.  The trouble is he looks healthy. He is not 100%. He has stage 3b kidney disease. He is tired all the time. Adding classes on after work for 4 days a week may not be sustainable. He signed up to regardless. I told him that worst case scenario is that he has to discontinue. He is frustrated and feels stuck. It is a very tough spot to be in for me and him. I wish I could make it all go away for him. I wish you had super powers to heal him and make him feel normal. ​I went to go pick up groceries today. When I pulled into my spot, I opened my door on the drivers side and headed around to the trunk. I left the drivers side door open.  The grocery lady came to load my groceries. I was helping her. I bent over to grab some sparkling w...

​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...