4/13

 I feel like Ethan and I are going insane. It feels weird to be beyond the four walls of our windowless room. We do have windows in our room I am being a bit dramatic, however there is a thin curtain that separates our side with the side that has windows.  We never benefit from the daylight. There is no where but the bathroom for privacy. 

Each day that passes is another day just a little bit of our spirit is sucked away. I don’t know if we have just had enough or what the issue is but each day is increasingly harder. 

When I go for a walk outside it is weird. I feel like when the walk is over, I have to go back to the cage. There are cameras everywhere, we are being watched all the time. 

Ethan was tired and not feeling super great. His pre-procedural jitters. The anxiety is messing with his stomach and making him lose his appetite. Not a great thing for someone that needs to gain weight.

Tomorrow’s activities include an early ride to the city, heart cath, heart biopsy, echo, ekg, bloodwork, hopefully ultrasound of the clot in his neck, hopefully we will be back in time for dialysis at 5:00. If we aren’t it is totally going to suck.

I went on a walk to clear my head and get away from people. I don’t want to talk....to anyone. I need to process my thoughts and I can’t. On my walk, I wandered around the adjacent neighborhoods trying to find some joy in the sunny day, getting a dose of sunshine therapy. I still felt blah.

I came back to the hospital and sat in their cages in courtyard in the sun, like a prisoner just watching life go on around me. Then enters a young man and his mom. They were my bright spot today. They came over to talk. They were delightful. 

This kid was a senior in college. He was being treated for leukemia that he found out that he had in November. They have been away from home as long as we have. His treatments caused an unforeseen side effect of nerve damage and loss of use of his arms and legs. He was working on being able to text.

He shared his frustration with his situation. He then shared his goals for the future. His goals don’t take in to account for the fact he may never regain use of his limbs partially or fully. He then said that He was happy that Ethan has healed as fast as he has. There is ALWAYS someone struggling their own battle that is worse than your situation.

Then this kid asked about Ethan. I told him the cliff notes version. He thoughtfully listened and when I was done talking he said “Well I can go get tested and if I am a match, he can have one of mine.” What a sweet heart!!!!! Just like that....boom...the compassion he showed Ethan without even meeting him....was priceless.

I feel like it has taken a life time for Ethan to heal. I haven’t even been through a fraction of what Ethan has OR this kid and I spent the morning boo-hooing in my pity party of 1. I had been Thinking about how my walk was not as satisfying as I had hoped....and here is someone that would give anything just to walk. Time to blow out the candles on my pity party cake.

I had been glad Ethan has been out of the room for the majority of the day. I knew my attitude was a bit toxic today and I had been keeping it to myself. I didn’t want to spread the virus of misery to him.

I decided to pull my head out of my ass...I had to use a little Vaseline but it eventually came out.  I was able to get more plans in action for orchestrating tomorrow as well as things for when we are discharged.

Ethan completed his personal interview and tour of the automotive program at MCC. He was really excited because he really liked both of the teachers. The three of them talked cars “I’d put a 740 engine in a 670 gtrs7.” and I was sitting there like “I like the blue kind of cars.” It all sounds like it isn’t even English. Then ended the conversation with they were going to get him registered for the fall. Ethan was smiling from ear to ear.

Even though tomorrow will be hectic....we will get through it. We will move forward. We will conquer another day. Tomorrow will lead to this weekend and then to next weekend and we will be home. Then I can resume my role of pestering Paul and playing jokes on him.