sign language versus paralytic

I don’t know which is worse. You may think the answer is obvious.

The answer is that I should run headlong in to the night, screaming.  Wait, that’s likely not the answer.

The answer is that I should start smoking and hanging out at the bus stop with all the other crazy mothers.


I will stay (relatively) silently crazy. Crazy looks good on some people. I don’t have the right shoes for it.


Now that Ashton is on his ventilator, and no more paralytic, he wakes up sometimes. This is a quandary.

I want him to not be paralytic because he can use his own lung power when he feels like it. However, he is strapped to his bed. He cannot speak, and can only signal, barely. We have to guess what he wants. He cannot have what he truly wants: water. He points to the sink.

When he is drugged, and it takes A LOT to knock him out, I can go to him. When he is running low on drugs I run the risk of agitating him. I want him to know I’m there, but it starts him up. It makes him upset. Numbers start to drop or climb the wrong way. I played a song for him this morning thinking it would soothe him and he got all worked up. I thought he was out cold. His little hands started flailing. I could see his eyes moving behind his lids rapidly.

Anyway, I do not have any news. He could make it. He could not. It’s a bad thing to have right now: aspergillus lung disease. Other people survive. On top of Gvhd, it is crappy timing but would not have occurred any other time.

over and out.




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