3/26

This morning bright and early, the hoopla started. Before 7 am the dialysis machine was being set up in our room. I was up before that. I heard the door open and saw a friend with coffee for me. Wow! My coffee machine was packed away somewhere. This was so needed. 

Last night we had another friend bring Ethan some candy because she felt so bad for Ethan and our situation. I want to be more like them. I want to make someone’s day a little brighter and easier. Random acts of kindness are contagious. 

Ethan had a warranted moment of frustration this morning. He was just upset and frustrated with the situation. He wants to go home and see everyone he loves. This has delayed him from that goal. He was frustrated by that. I am too. We talked about our bright spots. Paul helped us realize that our controlled reactions yesterday likely affected how someone else’s day went. Our social worker could have received a verbal beating for something that wasn’t her fault. Maybe, because of our reaction, her evening was better. Maybe she passed along some kindness too. Somehow this offers me comfort.

Calls have already been made and people are working on things for us. One of the insurance workers told one of our advocates she was being “aggressive”. I thanked our advocate for fighting for us. How amazing. I will forever be grateful for the battle she fought on our behalf. She had every reason to be “aggressive” and I highly doubt she was unprofessional.

We had already started working on plan B. Plan B was not nearly as good as plan A. But it was a plan. Luckily it wasn’t needed.

Ethan proposed the plan to come home and have me do all of his PT/OT. I explained that I am not trained in that sort of thing and he needs professional help. Plus, it would be very dangerous to put him into his element. He would try to do things he wasn’t yet capable of and hurt himself.

Ethan made plans with one of the residents to have a pizza party tonight. He was pretty excited about it. 

At 3:00, Our social worker came in to say the car would be here for us at 3:30. I quickly got things together as Ethan finished his test for school. We met with the people we needed to and everyone signed what they needed to. Ethan was very upset initially when we were told we were leaving because he was going to miss the pizza party. 

I took him outside for some quick sunshine therapy. The weather was beautiful. The sun was warm. He was still a bit salty and wanted to go inside. He is a bundle of nerves. 

We waited and waited.  3:30 came and went,  4:30 came and went. 5:30 came and went 6:30 came and went. What the farts (may have used a different F word) is the hold up? I had already loaded our things onto a cart to wheel downstairs. I think I got the smallest cart I have ever seen but it was better than nothing. This was the day I looked forward too but also dreaded.  Packing everything up and moving things. I am hoping I have help. I need for Ethan to not fall on the way out. This is the day I kept telling Ethan about. “We will walk out of here together.” 

As each hour felt like a week, we waited. Ugh! Ethan refused to eat dinner because he was so nervous this wasn’t going to happen. Each passing moment, pissed that we didn’t just have the pizza party.

We were visited by another friend from 9Tower. One we were grateful we got to see before we left.

7:00 pm Finally, our ride showed up. Woo hoo. I will describe the rest of the shit show tomorrow. We arrived a little after 10:00 pm.