This week, we suffered a major loss in our household: after 5 years of near-constant abuse, our washing machine has bit the dust. I loaded it with a small load of running clothes, started it, and it emitted the unmistakable smell of electronic self-immolation and became completely unresponsive. We've repaired it a few times before but came to the sad conclusion that its life with us had drawn to a natural close at this point. This means that we must survive until Thursday, when the new machine that I bought for Papa Bear as a 40th birthday present arrives. I even got him the matching dryer. Happy birthday! (Don't feel too bad for him, he's in the Bahamas right now while it's -9F in Madison).Other than the tragic loss of the washing machine and the celebration of Papa Bear's birthday, this has been another fairly quiet week. The one thing that I have been starting to think about more is how to help Lemon navigate the psychological aspects of CF, as he is getting old enough to process more of what is going on. Thus far, it's been pretty easy to act like whatever insane thing is happening is "normal," and for him to buy into it being normal as long as we acted like it was normal. That is now starting to change.
Case in point, his weight. It's really important for me to know his weight so that I can know where things stand, and make decisions about what we're doing with tube feeds. I have tried to never make a big deal about it. He sees me and Papa Bear weigh ourselves all the time. Whenever we do a weigh-in, I try to weigh both kids, and Lime is always happy to hop on the scale and make it a family activity. I also try not to make anything of the number that the scale says. We read the number together, try to figure out what the decimal point is and how to pronounce it, and then I say, "OK that's great, let's go play." Only afterwards, when Lemon is out of earshot, do Papa Bear and I talk about what the number was and what it means.
However, this week, Lemon got on the scale and weighed 44lbs. He got really upset, and said that his number was always the same and never got any bigger, and he wanted it to get bigger. I couldn't lie to him, it has been staying the same and we really do want it to get bigger. So, I tried to reassure him that 44 was a fine number (it's sort of borderline fine, certainly better than some of the lower numbers we've seen this winter), and that getting bigger is a slow process. I did mention that eating food could help the number get bigger faster, and it became clear that he wasn't quite upset enough about the number to resort to something desperate like that.
So, I do think one thing I will talk to the clinic about on Wednesday at our much-delayed visit is some strategies for talking to him about his weight and his pills, which are the two things he seems the most upset about right now. The enzymes don't seem to be a problem, but the pills he has to take after dinner have become a little contentious. Both of these are going to be things he will have to deal with for a lifetime, so I want to make sure we help him form good attitudes and coping mechanisms early so that he's ready for whatever the future holds for him.
