My son had cancer during COVID, though he was fortunate enough to beat it into remission (with the help of a huge care team).
I was active duty military, and he is also non-verbal and autistic.
The things she talks about, how focused she was and how hard it is to do any of that now, I've been experiencing exactly the same things. I find it hard to do anything, put anything together, etc. after 3 years of managing his care closely, being at his bedside all hours, having to scream at nurses to call away a code because he couldn't breathe (anaphylaxis), and a ton of other things. All of this while working 50+ hours a week, including remotely from his bedside.
It's like I burnt out that part of me. Maybe I'm slowly healing? But I don't feel like it. I get minutes or hours when I can hit that stride again and it's absolutely terrifying to realize that I can no longer keep it up.
I don't know that this comment adds anything to her story. I just felt like I understood her on a level that's hard to communicate and had the urge to share that.
I was active duty military, and he is also non-verbal and autistic.
The things she talks about, how focused she was and how hard it is to do any of that now, I've been experiencing exactly the same things. I find it hard to do anything, put anything together, etc. after 3 years of managing his care closely, being at his bedside all hours, having to scream at nurses to call away a code because he couldn't breathe (anaphylaxis), and a ton of other things. All of this while working 50+ hours a week, including remotely from his bedside.
It's like I burnt out that part of me. Maybe I'm slowly healing? But I don't feel like it. I get minutes or hours when I can hit that stride again and it's absolutely terrifying to realize that I can no longer keep it up.
I don't know that this comment adds anything to her story. I just felt like I understood her on a level that's hard to communicate and had the urge to share that.