4/7

Being a parent is hard sometimes. You never want to be the bad guy. As our days are full of therapies, dialysis, appointments, we also have to factor in school and daily self care activities.  Sometimes what has to be done, isn’t welcomed by Ethan. I am trying to look at the big picture while respecting the “I am an adult now” 18 year old. We have prepared to let Ethan grow up and push him out of the nest. He is ready to leave the nest..(sort of)....but without the resources and with blinders on.

I don’t want to say we are “butting heads” but I am trying to figure out a way for him to take care of his body that he has worked so hard to get to where it is, while juggling his obligations like school and hobbies.

Of course his brain is focused on getting home and seeing his girlfriend, family and friends. Trying to get back to a “normal” life that will never ever be the way it was before. It is a tightrope walk and I don’t want him falling.

As we move ahead and plan for a release in a couple of weeks, I brought up with Ethan the possibility of going to out patient physical therapy/ occupational therapy.

It was as if I had demanded him to hold a pile of dog poop in his mouth. “I am not doing that.”  You can imagine my shock as he has been willing to go above and beyond to get better.

I don’t want him to go because I want him to go. I want him to go because he wants to continue his momentum of getting stronger. Knowing it is a hot topic, we are taking a break from talking about it. We will revisit it again in a bit.

Until then, I am proud to say Ethan is now doing most self care on his own. This is quite an improvement and quite exciting. He did a little weight lifting in PT today as well and practicing getting up from being on the floor.

When PT came in to get Ethan for his appointment I did a very Mom thing and tried to bring it up in front of them. He shut the conversation down immediately. I respected his request but flagged down the second PT and told her quietly what the issue was.

I knew that there was a reason that this was a hot topic but wasn’t sure why. We weren’t understanding each other. Maybe we were both guilty of not listening to one another. When Ethan came back from PT, I was reading him an email from the team in NYC saying what we need to do when we transition home. Physical therapy came up again. I paused. He looked at me and said “PT says that I only need to go once a week and I can do it online.”  

I looked at him and smiled. “Yes!” You don’t have to go every day. You just have to do a little every day. We can do it together if you want. Yes!!! Yes!!! We found the communication issue. He thought he was going to have to spend hours away from the house on physical therapy. Once again, a slight miscommunication with your kids can be disastrous. Maintain a level head, work together to find a solution. Phew! I just needed a little help with a mediator.

We went to dialysis and discussed treatment options and rearranged our schedule to accommodate our NYC appointment. Ethan’s last dialysis treatment on Monday, we felt they removed too much fluid and he vomited (unfortunately all his medications) and felt like crap. We took more precautions today. Ethan spoke up and wanted to be conservative in the amount they took off because he felt he didn’t take on that much. I am glad he wants to take control and make these decisions together with a doctor.

We came back and had a very quiet evening. The roommates mom left.  No loud music. No talking to everyone on speaker phone. It was glorious.

There were many bright spots but my favorite was the quiet room. ❤️