Day 33: Independence

It's Independence Day in America. Americans are celebrating (as I read on Twitter) freedom from aristocratic nobles with damaging and unpopular policies that we can’t do anything about.

The independence that Charlie is working towards is to not need help making his way around. He had that independence before the surgery but it was waning. With that journey in our mind, it was good to note that there was therapy on the schedule on the holiday Monday.

Talking of the schedule, I got to experience first hand something that Aly had spoken to me about. Charlie really does not like it if he doesn't know the therapist that he has a session with. Aly, who is much better about speaking up about these things than I am, made a point of talking to the planners about this and they agreed to build his therapy around key people. This morning he asked who his sessions were with and he "did not know" the person that he was with at 11. This was around 8 and he mentioned this 11am session at least 4 times in the next hour ahead of his 9am session.

It wasn't that we didn't have anything else to talk about. Monday morning also brought the news that Aly tested positive for COVID. One of the many issues that Charlie has had to deal with as a result of his prematurity has been immune deficiency. When COVID was in the news at the start of 2020, we were one of those super-cautious families. We needed to keep Charlie out of the hospital. When, in 2022, we were given a surgery date for Charlie I started using the comment "we were cautious before to keep Charlie out of the hospital and now we're cautious to get Charlie into the hospital". He needed to have a negative COVID test or the surgery would be postponed. 

Aly and I had talked about what we were going to do about COVID precautions once Charlie was in the hospital.  Charlie's twin brother Henry was going to be home. He had no summer to speak of in 2020 or 2021. We wanted him to have experiences and that means being with other people. Other people means taking a risk of getting COVID. All of us are fully vaccinated and boosted so we have to go with that to protect us from getting really sick.

And that's where we are. There are two rooms in the corner of the floor where Charlie's room is that have infection precautions. Henry's gymnastics camp had a performance on Friday. Aly and Henry went to lunch over the weekend. Let's also not forget that Aly has carried all the weight of making all of (waves hands) this happen and is worn out. I have no idea if your immune system gets tired but I feel like it does. It doesn't matter one bit where and when it happened but Aly has COVID. 

So that's the background of the conversation Charlie and I were having. He's not phased at this point about the fact his mommy is sick or that she won't be changing out with me later as planned. We are talking about the therapy at 11 and he doesn't know her. He was legitimately stressed about it.

He did, however, know his 9am therapist and she knew him. She knew what to do with this and told him he would recognize her when he sees her and she was in the gym now... let's go.

He came back full of cheer having had a good session and now knew who he would be with. 

A short break with me then he went off to his much anticipated 11am session. 

After, during lunch, to my great amusement, he was once again a single issue talker. 

This time it was how nice, fun and great his "new therapist" is. As Ted Lasso once said "That's a real roller coaster there. Glad I was tall enough to join you on that ride."

One more session after lunch. He walked back from it with his walker.

We spent that afternoon together making a stop motion movie and he spent the evening adding effects. Look out for Beware of the Scary Man, coming soon to a YouTube channel near you.