Ethan’s Journey

I got an email today that we should be expecting a letter from Ethan’s donor family. I got sick to my stomach for how difficult it must have been for this family to write. I had anticipation butterflies in my stomach. I am curious about our donor but also can’t imagine the loss they experienced. We had been warned that we may never hear from our donors family. I reached out anyway. I do t really know what I expected but I asked the donor family for a name and some characteristics of our generous donor. I waited until we were all home and sitting together and I read the letter out loud. It was written by our donor’s mom. She shared that our donor’s name is Nicole (her friends called her Cole or Colie). “I KNEW it was a girl! I totally KNEW it.” He said. Colie was a nurse that was ambitious, adventurous, loved animals and loved being outside. I really felt that Ethan was the perfect vehicle to help her continue to live on, and they, as a team, can conquer the world together. Ethan let th...

Avery had her RIT campus tour today. She really liked it. It is fun to hear about all the different changes the college campus life since I was in college. I actually want to just live on campus and just not take any classes. Ha ha. It was nice to have a day to leisurely just enjoy. I napped this afternoon (because I stayed up way too late last night). We had dinner with my mom and Gene. It was fun. Paul was away all day snowmobiling. I feel ready to take on a new week. My back behaved itself today. I was thinking about how many hours I have actually gotten back just not having to do dialysis. It is wonderful.

Weekends. The most coveted part of the week. Today was spent getting some chores done. But it was also spent with family. It was spent being thankful for those being present in our lives.  Paul and I went on a date to listen to jazz music and have dinner. We went with some friends. Dinner was great. Music was great. Anything beats being immersed in medical drama. I am looking forward to spending time with those that matter most this year. I want to see some of the world n person. I want to spend time with friends. I am so thankful for the things and people we have. Ethan went to the lab this morning. I think his lab work looks pretty good, even though it isn’t all completely normal. We are close.  Ethan seems happy to be out of the house and back with his friends at work. All in all….it was a great day!

Today, Everyone was at work in our house. I felt bad for the dogs but this is actually a bright spot. Everyone is feeling well enough to work. I unfortunately received several phone calls I wasn’t able to answer. I have made a list to try to tackle next week. Monday I meet with the chiropractor during lunch so that day is out. Hopefully Wednesday…. My day off…..I will keep adding to the list for Wednesday.I have 3 appointments scheduled for Wednesday as well. I left work and went out to eat with a friend. It was so nice to see her. She offered some thoughtful ways to approach Ethan when he is a rouge teen. This new life totally beats dialysis! Avery, Paul and I watched a show together, Ethan was in his room playing a racing game. We don’t have to plan the next 4 hour session. I don’t have to prepare solution. Wow!

First day back to work. I spent the day in surgery which was great. It was a boring day. Boring is good and is similar to a relaxing day. My back is still a bit sore but I am keeping up my stretches and chiropractor appointments. I got to spend my lunch with a friend as well as the kids. It was wonderful. I am so glad I work so close to home. Total bright spot. I am going to try to keep my momentum up. 

Back to work tomorrow. Today was filled with trying to tie up loose ends and set myself up for success. I think I can juggle stuff if I can be efficient. Today we got 6 bills in the mail. 3 bills from collections, 3 bills from Columbia. All of them I have to forward on to the insurance person to settle with both Columbia and the collections agency. I got another letter from the prescription program saying another one of Ethan’s medications is being denied because we didn’t get prior authorization. It was the drug he needed urgently  to reduce Ethan’s potassium. I took pictures of the letter. Unfortunately, I didn’t notice the object that cast a shadow. I scribbled out the letter and personal details just to share the shadow. It was so bad I included in my email that I noticed the shadow looked “inappropriate” and assured them it was a wine bottle.  Tomorrow will be a long day back. I hope my disc survives.  Happy birthday Nana

Today was Avery and I day. I have missed a lot of time with my Minnie me over the past couple years. This kid is a delight. She is funny and smart and also can laugh at herself. She is thoughtful and empathetic. Her presence just offers a sense of calm. We tease each other A LOT! Today Avery drove on 390. We learned I have to be a better communicator, which seems to be a theme in our house. Avery did well changing lanes and looking in her blind spot.  We did some thrifting and I took her to lunch. We even ordered dessert. Ethan and his buddy went to pick up a transmission for his car. He was excited because he got it for a great deal. It was good socializing for him to make this deal, organize a ride (Paul had his vehicle) and make a transaction. Ethan is working again tomorrow. He likes feeling more normal. The weather was not great today. It was rainy and damp. Ugh! Glad our fire place was cranking.