Do I have to get my button changed?

Do I have to get my button changed?

This is Ty's question to all things whenever something isn't the way it's supposed to be(according to his logic).

It's so sad, he hears Brian and I talking, and instantly says, Do I have get my button changed?

He came over to me this morning to tell me his button is oozing, I tell him it's okay after I just check it, and he instantly say's, Do I have to get my button changed?

This is something that is always at the top of his think tank, always present, always a concern, always in control of him.

And there is absolutely nothing we can do about it.

This is his reality, this is his routine, this is something he will have to deal with the rest of his life.

Can you imagine always having something like that that is always an ever present thought, that the minute something is out of sorts, your mind instantly goes there and tells you there's a problem?

It's not easy trying to understand it. It's confusing, it's complicated, it's something that causes him great distress.

And there isn't anything we can do about that.... other then listen to him, console him when he's upset, help him try to understand (the best we can), and help calm his fears.

It's always a presence, he's always reminded about it when it's around 7:00PM, it's after dinner, and it's time to go sit on the potty.... it's a part of him like any other part of his body.

but yet even though it's been 4 1/2 years, it's still just as foreign to him as the day he got it.

I do wonder if he will ever fully accept his button, ever understand it's purpose and importance, and ever realize how critical it is for his life?

.......