Tonight, not so scared. Just one of those days you get up, go to work, do stuff because you have to do stuff whether or not someone's sick. I think that's most days - you just go. Do. Figure it out.
I was breathing easier for a couple weeks because the disease - which had taken hold of him so quickly - seemed to slow down. We were settling in to a routine.
Some of this is because Luther doesn't tell me stuff. He is generally eternally optimistic and I think he thinks he doesn't want to worry me. We've had the conversation that this isn't really the time to not worry me... I need to know what's going on. So some of this "settling in" was because I didn't know he was feeling some weirdness in his chest/lungs, his right leg was more troublesome and his right hand had become even more wasted. I hate to say I hadn't really noticed... but I had not.
Some of this is because the degeneration wasn't happening as fast as it had. Luther is still working, driving, he's independent when I'm not here. So we have this routine: I get up when he does (I work random hours and get to sleep in sometimes), I get his breakfast ready and make his lunch. If I'm getting home later than him, I try to have dinner ready for him. He gets himself dressed; sometimes I help if it's too challenging. The last thing I do before he leaves is help him get on his coat.
I thought this was ok. I could handle this life.
Until I realized it doesn't work like that. I've heard this is how it goes: you settle in to a momentary routine and then something happens and you readjust. This past week was my first adjustment! It's why I got scared -- each day brings another adjustment. Sometimes really small: I leave a glass of water by his bed now for when he wakes up coughing. Sometimes it's bigger: I helped him brush his teeth for the very first time.
Today was just another day - nothing major happened, I worked, he rested at home, we ate dinner. A good day.