Limbo

Thanks for the food and support, everyone.

I know people will be checking this blog often to see how Joel is. First of all, I want to tell you that no news is, if not good news, then OK news. I want to assure you that if Joel passes away, I will post a blog ON THAT DAY, once I have informed family. So, if you don't see a blog, please do not fret about that.

The reason you might not see a blog is more that there just might not be anything to say about how Joel is. I might need to blog some of my own feelings or struggles. But when it comes to Joel right now, it is any one's guess on how this will play out for us.

Right now it's easy to get sucked into a lot of up and down. It would be very easy to focus so hard on trying to find out what is going to happen that every tiny little "good" thing is a sign he's getting better, and every little tiny "down" is a sign he's going to die. But the truth is that these little pluses and minus's will just be part of things and don't really have much significance.

If Joel is going to get well, it's not going to happen quickly. His whole lung is full of goop, and that's not going to just clear out for him. In fact, the P/C doctor told me it is quite possible that it will never really totally clear out or even get much better, but that Joel's body might just sort of "find a balance" to live with it for .... awhile?? So that for whatever months he has left, he might not really be sick, but he'll need to sleep on his right side and he'll need lots of O2 and that sort of thing. He might be able to smile or play a bit once again, but he'll stay a lung short, and his health will remain very precarious. That is one possibility.

And even if his lung clears, it will be slowly. And the last place that will be confirmed will be with an X-ray or stethoscope. The P/C doctor said that often a return of strength and energy happens before the lungs start to clear out.

And the other thing is that every single day could be a day that he "suddenly" just is too tired to fight on. His breathing will not be steady anymore, it will go all wonky. He'll be less aware. And his hand and feet will get cold and mottled in a last ditch effort of his body to keep his organs going. It's just the nature of the way it goes.

You can't really say he died "suddenly" for surely we have our notice. But it is likely that his body will continue along in the same state, like a car, until it runs out of gas. And there is no way to know how much gas is left in the tank. There will be a few sputters, and then the engine will just die. The dial is on empty, which is warning enough. We just don't know if Joel can make it to the next gas station on the "fumes" left in the tank.

And if you have ever been in a situation where you were out in the boonies looking at that little "E" and a long stretch of road, then you can extrapolate how this feels. Just magnify the feeling. And this is why I'm trying really hard not to get too caught up in constant "He's going to live, no he's going to die, no he's going to live, no.... " You get the idea. It's very hard not to do this. But I'm trying. And one way I'm going to try to do this is not get you caught up in it either, by posting every little up or down.

So if I think there is anything SIGNIFICANT, then I will tell you. Otherwise you are stuck here, in limbo, with me. Not fun. And we could be here for weeks...

I'm not really sure what to pray for. Of course, I just want Joel to get better. Steve is desperately hoping that Joel could live at least until the summer comes. He wants a couple of weeks at home with Joel. It is very hard for me to tell him this is not likely... and I don't really have the heart. It is so hard to believe it myself...

Joel really does seem pretty comfortable. If he didn't, then I'd say pray that if he's going to die, he dies quickly. But I'm truly not seeing much suffering. It's not just me, in my mommy's wishful thinking. The P/C doctor came by today as well, and thought Joel was very comfortable. And yes, he'd be the one to say if it were otherwise, because part of his job is to make sure Joel is comfy.

So, just keep praying that Joel stays pain-free and comfortable. And that whatever God's will is, that it would be done, and more importantly - accepted by us.

I'm not hiding anything. This is very, very hard. Of course, later, I'll look back on this time and wish I could just do it again, because right now I can still kiss my boy and hold him. But living with all this uncertainty is very, very difficult.

I have snuggled Joel lots and lots. I will keep doing that. Not much else is left in my hands.