Lows on the scale of 1 to 10

I feel an urge to write here, but I have nothing in mind to write. Not that I haven't had some blog type material floating up in my mind to put down. Just that I sure don't have it in me right now to write any of that stuff.

Why?

Because today, using my good ole scale of 1-10, was really not that great. It's been a tough few days. I'd say that emotionally I have been somewhere around a 3-4. Mentally, maybe around there too. Physically, I have still been sick, and really tired. Like I'd REALLY like to stay in bed most of the day sort of tired. And spiritually, I have started to be pulled down by all the other "low" readings in my life.

And as long as at least ONE of those categories can score above a 5, I can usually still pull out a blog from some of the stuff rolling around in my brain, and it even makes me feel better.

But today, all those potential topics just can't inspire the motivation to get em out of the storage cabinets in my head. I guess this blog is an explanation of why that is.

Things haven't been so great with Joel for a couple a days now. That is a big part of it. I mean, for about 2 days now he has been unhappy. No, not unhappy. I think he's been in pain, and while I have been using meds to keep him somewhat comfortable, it's not been a happy time. I'm thinking we are going to have to make some sort of medical visit soon, to see what can be done.

And I have been seeing more instances where Joel seems to get too tired to breathe well, and his 02 sats drop as he breathes quickly and rapidly. Putting him on 02 usually has him recovered in about half an hour, but it is pretty discouraging.

And I have had a lot of "stuff" in my mind. Steve and I are planning on visiting a cemetery to decide if we want to buy a plot there. I've been thinking more and more about how aggressively to treat problems as they come along. Wondering about when it will be time to start tipping the scales more toward Joel's comfort and less toward long term life expectancy.

I've been thinking about what would happen if Joel died while with our respite worker. I've been meaning to ask our co-ordinator if she'll have counseling provided to her after Joel dies, because I'm worried about how hard it will be on her, knowing how attached she is to Joel. I've got lots of people to worry about in this way, but I feel a special responsibility for her, because we asked her to come into our home and become attached to Joel, it wasn't something she had to do. And I will have lots of support, but who will make sure she's ok?

I'm trying to keep it in my head that when something does kill Joel, I'm going to need to remember that Steve and I saved Joel's life many times over, so that I won't feel that we let him down when he does die. Because if Joel has a fatal bleed, it's gonna be easy to say "If only I had gotten his clotting checked more frequently." And if Joel catches pneumonia, it's gonna be easy to say "If only I had been more careful of germs," or "If only I had brought him in sooner." There are a few ways that Joel could die where it would be hard to blame myself. But most of them go the other way.

So whenever I make a decision to wait to bring him into the hospital, I remind myself that Steve and I (with the help of some other good people and God) have "given" Joel extra time by being caring parents and taking care of him. Getting him a feeding tube so he could get enough to eat. And by bringing him in over and over until he got the breathing support he needed. By getting his clotting factors checked. And by catching his adrenal insufficiency before it killed him. I remind myself that if it wasn't for medical intervention, he would have likely died at about 5 months of age. And so, I carry these "life saving" acts with me, as a ward against the day when I am afraid it will be hard not to feel I have failed him, even though I know I have been set an impossible task as his mother, for I can not raise him to adulthood.

And underneath all the thoughts, I carry a vague anxiety that sharpens from time to time into a feeling that is strangely like fear. I think I fear Joel's death. I suppose that doesn't sound very spiritual from someone who claims as great a belief, even a trust, in God as I have. But emotions are strange, strange things. I am not afraid of death for Joel. And I know that I'm going to be ok, in the long run. I know both these things. But there is something about his slowly advancing death that makes me feel something very much like fear, at times the anxiety sharpens so strongly that it makes me think of terror. A dull and vague sort of terror. And I don't really know what I'm afraid of. I mean, I can pick it all apart, detail by detail. I can logic it, and I can reason it. But I still can't really find a good solid reason for this strong of an emotional reaction. Unless it's just all the "little" worries that grow into a giant.

And of course, there is the pain. Always the pain. At times it would even bore me. But there it is, still. Boring or not, the pain is piercing and unavoidable, and in times of Joel's suffering, it seems everlasting. It is strange how feeling the way I have the last two or three days can feel never ending.

There are my thoughts. And there are my emotions. And God? I speak to Him, and I know He hears, but it is sometimes hard to hear Him through the pain. Mostly I have a question running through my heart over and over and over again. I think this is what drowns out His voice. This question. "Why? Why, why, why... why does it have to be so very hard to die?" In the end, I know the question will fade, with or without the answer given. I know, because these Questions are no strangers to me. They pass, and peace comes again. Even joy. But they are like a storm that beats down on you, until at times it seems there is nothing but thunder clapping over and over, and rain dripping off you, cold, wet, and stinging, noise and coldness and that is all you can sense.

Sometimes these storms pass so quickly the sun is shining and the rainbow is out even before I can communicate them to someone. So, if you read this blog and then call me tomorrow and I'm fine, don't be surprised. But actually, continuing in the vein of honesty here, please don't call me. I really can't say much on the phone, and I hate crying over a phone line anyhow. If you want to, come over. Because a warm, breathing body is just so much better than a disembodied voice. And if you can't come over, then leave a comment or email me your encouragement. My preference is: in person, via Internet, and phone calls dead last. And if you can't get to do any of those things, I understand. Just please pray for my little boy. Oh, and for me too.