It's becoming more and more difficult to pretend that Gavin's not getting worse. I know he's never going to get better, and that's something both my wife and me have come to accept over the years.
While I've accepted that fact, it's not that cut and dry.
Gavin's in an almost constant state of decompensation. Sometimes it's a slower process, and harder to pick up on, while other times, it's pretty rapid. One of the main issues revolves around his memory.
I tend to want to rationalize it by saying something like, *he's just having a bad day *or *everyone forgets things. *The truth is, it's not normal to forget things like Gavin does. It's not normal and it's not a good.
Here's the latest example of what I mean.
For about the last year, Gavin and I have been working on a little project that we're going to share, sometime after July 4th of this year. We've been saving all his IVIG infusion vials since July 4th of last year. The idea is to show what goes into managing something like *Primary Immunodeficiency *over the course of one year.
We're going to put all the vials together, and show how much medication is needed to keep someone like Gavin from getting sick, or worse.
We talk about this every single time he has his infusion, which is twice a week.
Yesterday he asked me what day we were going to stop collecting the vials. He didn't remember ever knowing that we were done on the 4th of July. I wanted him to try and figure it out on his own, so I was giving him prompts, or clues.
Unfortunately, he never remembered and I had to tell him.
It's heartbreaking because Gavin used to have the most ridiculous memory. He remembered absolutely everything, especially times, dates, and events. He could tell you what day his birthday fell on for all his past birthdays. It was amazing.
Now we're lucky if he remembers the four digit pass code for the front door.
I have to be his memory anymore. One of my projects in the very near future is to help Gavin utilize his tablet for more than just games. I want him to learn to set reminders, and maybe even leave himself video messages to remind him how to do certain things.
I need to get him a smartwatch, so the reminders show up on his wrist throughout the day, and he can gain a bit more independence. I know that would make him feel good about himself.
Maybe he'd be better off with a smartphone. I don't know. It doesn't really matter.
The point is, things are getting worse for Gavin and it's getting impossible to hide from that truth anymore.
