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Kids in the hospital and progressive illness.


DCMJ

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Spent a good portion of this week bouncing between work and visiting my disabled 21-year-old in the hospital.

Watching this young man struggle to do the simple daily tasks we take for granted wears you down. Knowing that all you can do is make his life fun and as simple as possible, more so... Worst of all that he inherited it from his parents and there is little we can do beyond that? Yeah, that one is the mother of all.

He's back home with his mom, on new meds and changes in his existing "cocktail". Doing much better than I've seen him do for some time. That's all I can expect, but that's huge.

I hate this damn disease and what it has done to my son.

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Thanks to everyone who took a moment to reply and the PM's received. My son is home and doing well, the frustration is back in it's usual carry-on and this thread has served it's purpose.

I have friends that lost children in their teen's or early 20's. I feel lucky to still have my son even if I mourn each new deficit like a small death. Any day with him in my life is a better day.

So with that --

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