Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Wednesday, June 2, 2010

Lifeboat

I'm not really sure what this blog is going to be about. I'm just taking some advice that I used to give out to my students, when they felt uninspired. That is, just sit down and "take up pen and put it to paper." Put just anything down that you are thinking, and the more you write, the more likely that inspiration will strike you.

I feel somewhat uninspired myself. Or perhaps to be more precise, or just more honest, I always have tons of stuff going through my mind, but is it worth sharing? That is the real question. I mean, I could likely quite easily churn out a blog about "Mistakes NOT to Make When Doing Laundry." Or "Five Easy Ways to Drive Your Toddler Crazy." But that is not really what this blog is about, is it?

My dad starts his hard-core chemo tomorrow. The "Induction" stage. It is slightly worrying for two reasons. Number 1 : if he gets any sort of bug while they have completely shut his immune system down, it could even kill him. Number 2 : What if this time it doesn't work? My dad seems in good spirits though. And my mom seems to be doing ok.

Joel is doing ok. His breathing isn't great, but it remains much, much better than I expected. By which I mean that as long as I keep him on his side, he is strider-free and almost noiseless when he sleeps. Even when awake, though, he has some strider on his back these days. I'm thankful for the fact that he doesn't need to be hospitalized and that he mostly seems pretty happy. That is all I ask for these days.

You wanna know something that has been hanging out in my head these days? Maybe if I blog it, it'll leave my system. But it is sort of weird. I mean, sometimes strange things occupy my thoughts. Well, here it is. Take it or leave it. This won't be Shakespeare, I truly don't know why it's been niggling in my mind, and I apologize if you find it odd, illogical, unconnected from practical daily life, or boring.

I don't know at what point the whole philosophical idea that ethics were something we decide depending on the situation came into being. And I don't really think that it is that "big" or "new" of an idea these days. But every now and then, people say stuff that seems to reflect back to that whole idea. About choices being gray, or the "greater good," or whatever. And there is something bugging me about the whole thing.

So, before I start, I must put in all the appropriate disclaimers. My beef with the whole ideology is not that I don't acknowledge that sometimes life throws situations in front of us, where we need the wisdom of Solomon to unravel what is the best thing to do. Having lived in the world of medical decisions for awhile, I can tell you that I fully appreciate that some decision, like whether or not to have a trach put into your terminally ill child to help them breathe, well, heck. I'm not criticizing any decisions here, cause... whoa. They do seem morally almost indecipherable at times.

So it is not that.

I was thinking back, waaaaaay back, to that old "lifeboat" scenario, which goes something like this: a bunch of people are all in a lifeboat floating at sea, but there are not enough supplies to go around until you think you might be rescued. (What is this, the Titanic??) So what do you do? Who should leave the lifeboat to ensure that the remaining people have the best chance to survive?

Of course, I was thinking about it, because it is obvious that if Joel were on that completely hypothetical and ridiculous lifeboat, he would be the first one to go. And that made me feel angry, even though the whole scenario is a silly made up one, and even though most people wouldn't waste firing a single neuron over the whole idea. Apparently my neurons have nothing better to do than rehash out dated scenarios from the 70's.

What really annoys me about the whole philosophical movement that says that decisions should always be made considering the greatest good to the greatest number of people isn't really some wacky scenario where my son would be considered a worthless drain on precious resources. What annoys me is that I disagree with it on two points.

Number one, it ignores the possibility for heroism. Maybe some one on board that dratted lifeboat might actually say "Hey, take my water! I'm just going to get out and float alongside the raft cause there is just not room for all of us." I am, at times, terribly skeptical about the goodness of other people. I really believe that most of us will, left to our own devices, sink to the level of our surroundings, not rise above them.

But I still do believe in heroism, and I feel sorry for people who can create a scenario that excludes that as a possibility. I mean, if you are the "leader" in this leaky lifeboat, isn't the truly ethical thing to do to be a selfless example?? Isn't that what anyone who is philosophising about ethics should be calling us all to?

Heck, if what is going on in that lifeboat is the strongest ones making some deals and justifications so that they have the best chance of survival, who needs an ethicist?? We all have brains and a survival instinct. I thought the whole reason we might need one of those dudes was to help us realize that it is still good and important to do, well - GOOD, even when natural instinct war against it. Talk about "scenario-ing" yourself out of a job! (yeah, just made up a word.)

My second gripe is that it is viewing things from a totally materialistic perspective. I mean, how are we measuring "good" in this situation? Simply: what ever is physically beneficial. Sorry, but I don't subscribe to that world view. I believe in other, less tangible values. I believe in a spiritual plane. I truly believe that you can gain the whole world and still lose your soul. Maybe things like: love, respect, generosity, truth, hope, freedom, maybe those things really are worth dying for.

So in this scenario, the greatest good is that which provides physically for the most people to survive. Even if it means tossing a few who are dragging the rest down overboard. Cause we are thinking about the "greater good." Well, what about the greater good of a group of people who are unselfish? Who are willing to risk their own lives to treat everyone as worthy of kindness and respect? If you are looking, in the big picture, at the greater good, then I wonder who you would really WANT to fish out of the ocean to join the rest of society? A group of people who played a little "real-life survivor?" Or a group of people who barely made it cause all of them absolutely refused to give up on anyone else unless they were already dead? What kind of message would that really send to society about those unfortunate few that were tossed? I think it would say that some people are frivolous. We keep them around when we can afford it, much like the family heirlooms, but really, they are expendable.

I would argue that it might be better to die than to do something that hurts another. I believe that death is not the end for me. If death is not the end, then ultimately my death doesn't matter as much as my life. And living it in the best way. And maybe more times then we care to admit, life is not a huge panorama of gray choices. Maybe it is a panorama of black, shades of gray, and white choices. The trick is to notice the white from that sea of gray, when it is available and choose it, no matter the cost.

I guess here is why that might all be going through my head. My little boy is dying. And it would be so easy for me, myself, to get caught up in what is physically happening. Because physically, what is happening is evil. A person who was fully and truly devoted to the idea that the only good is in what is material might be led to believe in a mercy killing for Joel. Don't worry, I am diametrically opposed to that notion.

And so I must remind myself, even when it is horrible to see Joel losing strength. Even when I start to worry that he might one day not be able to suck his own thumb for comfort. Or when he is hospitalized. Or all of the other absolutely sick-making ways that Joel might die. It isn't pretty. I can get very caught up in that. So caught up that I start losing sight of the fact that this material stuff going on is not the be all and end all of things.

Hey, I'm not trivializing it. Hello, I'm living it! And I HATE it. It is very easy to start seeing what is physically happening to Joel as an enormous, monstrous figure of evil incarnate. I can actually generate so many angry, negative emotions about it, if they could be harnessed, the Frankenstein monster could be reanimated with a terrible strength. I could be swallowed up in my hatred of this disease and what it is doing to my son.

But I'm going to remind myself what I know to be true. It is only pain and it is only death. What really matters is not the suffering. What really matters is loving God and loving Joel through it all. And then, when the torment is finished, reaching out and loving other people too. Because the pain and death can not harm us in the end. And so our best responses to all that is happening will be the ones that refuse to be sunk under fear of suffering and death. Our best responses to situations will be the ones that look past the physical, to other, less tangible but no less real dimensions. With God's help, we will do this. "Lord, I believe. Help Thou my unbelief."

1 comment:

  1. Joel and Graham both would stay in my lifeboat because they ARE the "greater good".

    Graham kisses to you. <3

    Tracy
    'Angel' Graham's Momma

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