Sunlite
So I saw my son yesterday. He is in a residential program in another state, after the divorce he went with my wife, then she could not deal with him at home. I would have taken him, still want to, but I cannot logistically deal with two severely disabled children at home.
It broke my heart. I seem him monthly or so. He is now at that age where boys (young men) really grow, just after they turn 13. He is taller and bigger. His disabilities seem to be worsening, something I did not think possible. His posturing (hands, arm, feet) is worse. His vocalizations are more inappropriate (responses to apparently nothing). His demeanor is worse.
I do not think any of this is because of where he is. It is a wonderful place. Maybe it is just him. Maybe it is because he is not in a loving home. I don’t know. I don’t blame myself, of course, but I do, of course. Yeah, makes no sense.
His sister is doing so much better. She does not regress. Her disabilities stay the same. Her issues are different than his even though the core diagnosis is the same.
How do I explain to myself how devestating it is to visit my own son?
As I have the time I have been trying to read your entire blog from the beginning. I know, I know, I’m strange. I’m seeking…I don’t know, answers? Insights?
Some things have jumped out at me, and I wanted to pause and tell you. You are made of some pretty amazing material…and you know what? I think maybe I am too. I have felt a lot of the things you have written about in your early days, and you survived them, I think I might be able to as well. I just have to work harder at it.
Not to mention, you’ve done it alone. Making it that much harder.
I don’t know you at all, we’ve never met, but holy crap you are an incredible inspiration to a man like me. Not trying to sound overly homo or anything, but you really do make me constantly evaluate myself to be a better father and a better man. The battles you have fought and continue to fight for so long, and still keep your sense of humor and yet you also still keep your dark side with you as companion but controlled. That’s remarkable.
It’s funny…my Mother keeps pressuring me to write a book, since I keep stalling out on what to do about a career. If I could pick any subject in the world to write about, I would write about your life.
Something else. It’s interesting to see how your blog has evolved from these early entries to now. They started much more rapid-fire, in and out. Quick. You are much more introspective nowadays.
I did it again didn’t I? Blog hijack in progress.
Well, it’s a REALLY old blog entry, so I figured breaking my 4 paragraph rule was OK.