11.5.08

last night was an historical event, ...and john could not even stay up to watch the results.

since trick or treating john has not been well. i realize that this is what happened after the halloween party and after, ...mmm?, ...something else. i'd have to go back and look. in any event, it's a pattern. the normal day to day exhausts john so much that when he participates in life beyond the normal day to day he ends up is in so much pain and so fatigued and so crabby and so swollen for the next 3-5 days that it's just terrible. the kids noticed the pattern too. isaiah was the one who pointed out, 2 days after halloween, that "this is bc dad overdid a few nights ago. he'll stop being so bad in a few days like last time". and mary said, "this is bc of dad's sickness".

the challenge here is living with a person who tries so hard to live life and not let anyone down or cause worry and he pushes through and paints a smile and doesn't complain and .... everyone thinks he's just fine.
people, he is not fine. he is not good. he is not well or healthy or 'doing better' or whatever. granted, he is off chemo and not been hospitalized for 6 full months. and do not get me wrong i am profoundly grateful for that as is he. but at what point did 'not on chemo or in the hospital' become the equaliviant of well or healthy?

now, i know, it's all about learning to live with chronic illness and redefining 'normal'. i get that. but still, it is important for people to understand that what he lets you see is not what really is.

please, pray for continued healing, strength, patience. we are still in need of prayer.
thanks,
k