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!





Tuesday, November 16, 2010

Bent

Last week I took Caeden out to the mall for our respite and we bought a lovely new jacket and snow pants. We took the bus to get there, which was so much fun for Caeden that he asked me in the cutest, most earnest voice, if we could live on the bus, because the bus was so coo-owl. We also saw a lady who had something medical "wrong" with her, and her hand on the bar next to mine caught my eye. It was extremely malformed. The thumb was bent at a strange angle and some of her fingers were not really very "finger-like" at all.


And I thought about how wonderful it would be if I could just reach over and touch her and her hand would miraculously grow straight and beautiful. All her fingers would work the way they should, flexing and straightening, grasping and releasing. She'd be able to pick up tiny objects between her thumb and forefinger. All that amazing hand stuff that we take for granted.

How terrific would it be, if I could not only make her hand whole, but if every person I came across, I could touch any of them with an illness or deformity and make them well and whole. Suddenly, I really just couldn't think of any more joyful work then that.


Of course, that made me think of Jesus, and how He basically did just that. As He went on His ministry, He healed anyone He came across who was broken in some way. There are no accounts of anyone in the Bible He refused to make whole. That made me think of the healing coming one day, a healing for nature itself, and how everything bent would be made straight. Everything and everyone, whole again.

But perhaps the most precious of all, how the internal "bent" part of us would be straightened one day for good. Because we are all bent inside. Deformed. Crooked. Not whole.


Last Sunday Steve stayed home with Joel and I went to church. And when I came back, nothing had been done in the house. By which I mean that dirty dishes sat on the table and the dishwasher was not loaded or put through, etc. etc. Steve told me that Joel was happy at first, but then became irritable and then he had held him the whole time I was gone.


I confess that my first thought was that Steve had likely procrastinated when it came to cleaning up. He probably thought he had lots of time to do it, instead of doing it right away, and now I had to clean up the whole mess quickly before our respite worker arrived and we went out.


Then a little voice piped up "Even if Steve did put it off, haven't you put things off until later too, and then been interrupted by Joel? Wasn't supper late once this week partly for that reason?" Oh sure, I continued to grumble, but I don't do that very much. Just now and then. But that little voice wouldn't stop. So I stopped for a minute and thought about it.


And after truly thinking it through for awhile and a bit of soul searching honesty, I concluded that it would be more likely that 50% of the time I do what I need to right away and 50% of the time I wait until I have just enough time. Of course, half of those 50% days, Joel is good and lets me get things done even if I wait until the last minute. So it would appear as if only 25% of the time I were procrastinating. That is only because I'm not caught out.


You see, I'm bent inside. Yup. I'm bent. Like an arrow. I used to do some archery at camp. If you have a bent arrow, let's just say you do have a good reason not to hit your target. You can't get very far firing a bent arrow.

And so with me. I have these flaws. That is a kind way to say that an ugly and base sort of evil exists in my nature. I'm self-ish. I'm self-centred. I'm ego-centric. I'm self-absorbed. Getting the picture? And I often do things that harm other people because of this horrible bend.


But it's like trying to see yourself in a wavy mirror. You can't get the real picture. Because I'm looking through my bent nature. And the bend is about me, me, me! So I say "I would never do that," because I can't see myself properly through the mirror of thinking that I am the universe. I so often can't see what is wrong with myself, because I'M the one looking. If you are bent, how can you see straight?


In rare moments of honesty, particularly when speaking with God, the truth is pointed out to me. Now, don't any of you write me nice comments saying how I'm really not that bad, how it's only natural and it's only human. I know you'd be trying to make me feel better. But it would sort of be like trying to treat cancer with a nice Elmo band-aid and saying "It's not that bad." It's just better to be honest about these things. Nothing gets fixed by denial. Trust me, I know.

And I'm sorry, but I have heard of the Holocaust, and Darfur, and Rwanda, and Bosnia and I'm only getting started, so if you tell me it's "just human nature" to be selfish and egocentric I can tell you I find NOTHING comforting in it, realizing just what we are "naturally" capable of. You might say I take a dim view of human nature.

You might think I'm exaggerating by placing myself anywhere near the category of the above events. If so, you don't know me as well as I know me. Lately I've seen some pretty ugly things in my heart. Sure, they are natural. And ugly as sin. Did I use the "s" word? Well, maybe take out the "as" and the sentence is more correct. I do believe in Evil, capital "E" and in the last weeks I have seen the enemy and it is me!

I'm not depressed by this, though I have felt ashamed at times. You see, without seeing this ugliness and acknowledging, I can't have hope of a cure. If you deny you have cancer, you won't get treatment and then there might be no hope for you. I have cancer of the soul, but I have a very good doctor. The Great Physician, some call Him.

Which is what the real message of Christmas is about. A peace child. God making a way for us to truly deal with the evil that is our nature. To face it square on, see how ugly it really is. And then be forgiven.

I don't know about you, but there are times when I have been forgive by people, and then there are times when I've been excused. I'm grateful when they excuse my behavior, because I like them to think I'm better than I acted. But there is still an uncomfortable level of guilt and discomfort, because deep inside I realize that I'm NOT better than I acted.

Forgiveness, that is really something else. Because even though I'm still a screw up, even though sometimes my action show that I can be ugly, they are still going to love me anyway. And that is a wonderful thing. I don't have to worry they'll find out the truth. They know the truth and they still love me.

And this Christmas the message has been singing so loudly to me, even amidst all the sorrow and grief I have been feeling. Even though I have seen some uglies rearing their head. I'm not proud of them.

I'm forgiven, though. Truly forgiven, and not excused. God knows how much evil there really is in my nature, but He's made a way for me to be forgiven. And for what is bent to become straight. Because the more I'm honest with Him, truly honest, so I can ask for His forgiveness and help, the straighter I become.

And one day there will be full healing. Healing of the body, yes, as I hope for Joel. But healing of the soul too. This ugly evil nature will be healed completely, not just in part. A day of healing is coming for both Joel and for me. And the thought of the healing, both kinds, makes my heart sing.



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