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!

Tuesday, October 19, 2010

Table Talk

A few days back I had an interesting dinner table conversation with Caeden. I wanted to write it down right away, before the details got fuzzy, but that didn't work. So I'll just do the best I can.

I was explaining his memory verse from Sunday School, telling him that Jesus, and God, were our King and that meant we showed Them respect, which is what we meant when we said we "bowed" before them. Caeden replied by informing me that Jesus didn't have a crown and he couldn't see God. So I told him how kings don't have to were their crowns ALL THE TIME, sometimes they could take them off, but they were still the king. I said that one day he'd be able to see Jesus wearing His crown.

And somehow from there we got to him saying how it was too bad we couldn't visit God because we didn't have a space ship. Maybe we should build a space ship, he said, and then we could fly up to visit God. Ah, I explained, that one is really tricky to understand. God isn't in outer space. Or rather, God was everywhere, even here, but we just couldn't see Him, because the way He was here was through another dimension.

Yeah. I said that to my boy. How else are you gonna be able to understand abstract concepts unless you spend a lot of time getting a sense and being familiar with them? So I said that a dimension was really hard to explain, but it meant that God could be right here with us, but we couldn't see Him because He was with us in a different kind of way, called a dimension, or some people might say a spiritual dimension. And he seemed to accept that as a good enough explanation for now, though I'm pretty sure it was way beyond him. Heck, it's really quite a bit beyond me, though I like to ponder on it from time to time.

I also told him that one day we'd all see God, because we'd go to be with Him, just like Joel was going to, only Joel would go before us and meet us there. This made him quite upset, because he didn't want to live somewhere else, he'd miss his house too much. I don't know how he is ever going to handle it when one day we are financially able to move into a house of our own. He's going to be devastated.

Of course, when Joel does actually leave us, he might be pretty devastated too. I can never tell how much Joel is a person that he is attached to, or how much Joel is just a familiar piece of furniture to him. Lately I have sensed a bit of a change in how he relates to Joel, as Caeden is maturing more and more. So it seems that Joel is less a familiar part of the background, and more of a person to him. Either way, it's going to be difficult for him. Even just on the level of that familiar face disappearing suddenly.

And it's going to be hard to know how much comfort it can really give him, the thought that Joel is with God. It brings me comfort, because I've known God for years now, on a much different level than my son, and I know that the God who keeps the angels of little children ever before His face, will take good care of my Joel. But how will Caeden understand Joel leaving the only home he's ever known, and the family who loves him, for an unseen place and a Person he is only vaguely familiar with?

So as these moments arise in the "normal" everyday conversation, I'm trying to talk it over with Caeden a little bit more. The good thing about children is that they are curious about everything and have not yet learnt to be afraid their questions are "stupid."

Good thing. Because there are going to be a lot of difficult situations and concepts to deal with ahead of us. Like how much should we "allow" Caeden to see Joel after he is dead? Should we take him to the funeral? Let him see us put the coffin in the ground? I'm going to take a lot of cues on this from Caeden himself. I don't want to push him into something he's not ready for, but I also don't want to exclude him, or make him feel that what will happen is "taboo" for him, either. That Joel's death was an "adult" thing.

I wish so much that I could give Caeden Joel's health restored to him. So that he could talk with his brother, play with him and fight with him. Mostly just that he wouldn't have to say good bye to that sweet little face that he's gotten used to being around. The little face that smiles when he hears Caeden's voice.

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