It has been pointed out to me recently that I’ve been a bit slack with updating the website. There are a few reasons behind this: mostly because things aren’t going well and haven’t been for some time. Another key reason is that I don’t like to make the people we care about feel bad when they read the blog. I know this will happen when I deliver ho-hum news. Finally, I am tired. Tired of Joey not feeling well, tired of our lives being on hold, tired of not being able to be at work, tired of needing to ask for help, tired of not being able to have casual conversations about what we are doing now without it turning into a more miserable and in-depth talk than we want to have. I am talked out and I know Joey feels the same about things as I do. In short, we are tired of not being able to be “normal”.
The last time he was in hospital, when we went to Circle K, we bumped into a friend of his whom he hadn’t seen in a couple of years. When he asked Joey how he was doing, Joey said: “Good”. I could see the skeptical look on his friend’s face as he followed up with a couple of “Really?”s. Joey maintained his stance. This is in spite of the fact that he looked even more jaundiced under the gas station lights and that he had a hospital band on his left wrist. “Good”. I think our standards are different than most peoples’.
The funny thing is that he wasn’t lying; it actually was a good day. We were happy he was out of the hospital for a few minutes and that we could do a simple errand together. Our “good” is a day when he feels less bad. Joey spends the majority of a typical day asleep. When he is awake, I am trying to figure out what I can feed him that he won’t throw up (he has a fairly persistent problem with nausea), cramming pills down his throat, pressuring him to do his sinus rinses, keeping tabs on his breathing tests, encouraging him to do whatever exercise he can to try and get him in the best possible shape for his surgery, among other things. In short, our lives right now are ruled by Cystic Fibrosis and its complications. Even something as simple as going into town to visit our friends is a challenge.
My intent with this post is not to make people sad, but to hopefully paint a clearer picture of what we go through on a typical day. I find that I tend to focus a lot on the positives when I write. Again, the intent is not to be deceptive, but rather, to keep us and the people around us in a positive frame of mind. We need to think this way if we are going to get through this. That’s the reason why, when I wrote about our trip to Victoria, I focused on the fact that we were able to make it to my sister’s grad, got to meet Chrissy and Trav’s new baby, and were able to visit with at least some of our friends. If I didn’t, the post would have focused on the downer stuff: we didn’t get to see everyone we wanted to, Joey screwed up his back two days into the trip and spent the next two days laying on the couch, we dealt with nausea, vomiting, and a mysterious high fever that keeps coming and going for some unknown reason. That kind of stuff is a typical day, so if we focused on that and not the things he is able to do, we’d be uniformly miserable. The reality of the situation is that things do not stand a chance of improving until after Joey gets his liver transplant. If he gets it at all.
We’re sorry that you will be upset when you read this. Like I said, it is nothing new and we are coping, as we always do. The big things that other people think are little bring us huge rays of sunshine: the fact that Joey is able to be at home right now and is not in the hospital, the fact that at this moment, by his standards, he is not feeling too horrible, and the fact that we are lucky enough to have an ever-expanding, kick ass network of really supportive people surrounding us.
Who could be depressed by that?
K & J