Phrases I Hate

But he looks so healthy!~ He's not. I have the bills to prove it. He takes a small drug store daily and some of his meds would put a horse off it's feet.

But he's so young~ Yes he is, I'm well aware of the fact. But he's not the youngest.

I don't know how you do it~ What other choice is there? He's my son, if I don't do it, who will?

You're a strong woman~ Why because I haven't fallen apart yet? You don't see me when I'm crying in Walmart after having to give an update to a friend. Or the sleepless nights worrying on if he's strong enough to pull through. Or feel the terror when you hear of a suicide. The worry on if the right decisions have been made, or the what if's. How one little last minute change in the schedule can turn everything into panic mode. I'm no where near strong. It's one foot in front of the other, the only other choice is to give up on not only him, but everyone else. I have fallen apart, I just now choose to keep that private.

How?~ God I wish I knew the answer to that question. There are no answers.

Medical Marijuana would help.~ Yes it is showing promise for migraines and chronic pain. But it would also cause him not to be able to be listed for transplant for up to 2 years. People are dying who are completely compliant with UNOS on the list. He needs every chance he can get. Once he is sick enough for transplant, time is critical.

Have you tried...?~ If it's suggested by his doctor, outside of PT right now, we've tried it. As for that not suggested, see above.



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I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 

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