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..


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!

Saturday, November 20, 2010

Anger: Part One

Several times since we had our diagnosis, people expressed surprise that I (Steve too, but I'd let him speak for himself on this one) was not angry at God.

Anger as related to loss or grief is not a subject to treat quickly or lightly. It's one of the five "stages" of grief and it's a huge, huge thing. So even starting off, I titled this Part One. Pretty sure I'll not get it all in one blog. But I've wanted to say something about it for a long, long time. Like since I first started this blog, last December. And as time went on, I think I just found more and more to say.

So, yes, I have been angry at God, but I haven't been ANGRY at God. Hard to explain the difference exactly. So I'll use an example. Sometimes I get angry at my husband. (yeah, can you believe that, a wife getting angry at her husband.) There are sort of two "types" of anger here, though it's sort of a inexact way to sort it, as anger is not an exact science, eh?

Sometimes when I'm angry at Steve, I have what I feel are justified feelings of anger. The sort of anger when it's pretty clear that Steve has wronged me. The sort of anger that doesn't really dissipate over time. The kind where we clearly need a discussion to clear the air, one where I hope he's going to apologize, and if he doesn't, there's going to be a bit of work on my side to "get over" it and move on. You know, (just throwing out some examples, not saying Steve has done these ones) the sort of thing where you caught your spouse in a lie, where they said something extremely hurtful, or spent $300 dollars on something you had both agreed you didn't need and wouldn't buy. That sort of anger about that sort of thing.

Then there are the other times I'm angry. Hey, I always have a "reason" but it's just honestly not always a very good one and I sometimes can recognize this even in my moment of anger. Like if Steve forgets to pick up something I asked him too. A totally "honest" mistake, but I might for some reason inexplicable to me, get really annoyed. Like the example I have given before of stubbing my toe and then being angry at Steve for not responding to that "properly" even though I know inside "Hey, what way WOULD be the proper way??"

These moments of anger insanity on my part are usually the result of me being frustrated or hurt, without there being any real target for my anger. Steve is there, and he is my husband, making him illogically the best candidate to elect as the recipient of my negative feelings. (seriously, poor guy!) We've all done this. It's the sort of "bad day" scenario where those who love you tip toe around you or avoid you because they know you are just looking for a target. No?? Is this not sometimes true of you? Because it sure as heck can be true of me.

The thing with these second types of anger situations is that most of the time as my frustration or pain dissipates, so does the insanity and my anger evaporates quite quickly. In fact, in most of these situations, if you give me about 5 or 10 minutes, I've come to my senses, as most likely I even knew I was being "crazy" while I felt the anger anyway. I know I'm not "justified" to feel so angry, and so most of the time a voice of reason is whispering "Hey, crazy lady, don't shoot anybody here, because later on your going to see that it was a mistake on your part and your going to regret it greatly if anyone gets hurt in this moment." Most of the time. ;)

And I sure have been angry at God, but it has been the second type of anger. I've been lashing out at Him because I've been in so much pain, and who else could I target or make responsible? Even though I don't think God "caused" this in the usual sense of things, the fact remains that I know He could STOP it at any time. I know the power lies with Him to at any time miraculously cure Joel.

It's a response of emotions and not sense, though. I mean, I can clearly understand in my mind and heart why God allows this. Even though I sometimes question why Joel has to suffer in the smaller details of things, in the larger picture I get it. If you have read all my blogs along the way, you can see this. So many of them hold a piece of that puzzle, from where I've written about acceptance, to the places I've written about how Joel is even a special sort of gift, from how I feel Joel has taught me so much, to how I know that in the long run Joel has had a wonderful and happy life, specially compared to what some children have, to the fact that I know death is not the end. The pieces to my mental reaction, the reaction of my better sense, and even the reaction of my heart in the better times, the pieces of that puzzle I have already give you in my other blogs. You can put it all together for yourself.

The times of my anger are the times when the insanity of pain strikes me. Like the woman in labour who snapped at her husband "You got me into this!!" So it has been with my anger at God. It's the middle of the night, my boy is crying, I'm tired and my every heartbeat is piercing me is the sort of anger I have felt until the labour pain passes and reason returns to me. It's normal and natural to be blinded by the insanity of pain from time to time. Especially in the middle of the night.

But I have never found myself angry in the morning. The clear light of day sees it dissipate like the mist. I don't like what I'm going through. As I've said many, many times, I would NEVER choose this for myself or for my child. The fact that it is happening without my consent or permission could make me very angry, I guess, but long, long ago I gave my life to a greater power. I told God long ago that I was surrendering my desire for control (because a lot of control is an illusion anyway, so surrendering my desire for it is more logical than saying I surrender control) and that I was trusting Him with my very life. I found myself able to do this in complete trust, because I knew that God had paid with His own life in order to deal with the evil in my own. I have never, ever regretted that decision, not even with all that has happened with Joel.

And so yes, I have been angry at God, but I have never been ANGRY at God. We have had words and mine were not always innocent or kind. Or reasonable. That's ok. He always forgives me, because He knows my weakness and He "remembers that I'm made of dust" (that's from a favorite Psalm, 103). And when my pain is stilled for a moment, reason returns to me. Then He holds me close, and joy returns.

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