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!

Sunday, June 27, 2010


I don't feel like writing this blog right NOW, but I am worried it will just fade out of my head completely and won't get written. Sometimes my blogs just bounce around in my head forever until I finally get them out. Other times they seem like dreams that fade away as you wake up, if you don't tell someone right away, you just can't really visualize it anymore.

And I don't want to lose this one. But even now, I don't remember "where to start."

So I'm going to start with angels. Some of the parents who have lost their children refer to the day they died as their "angel day." Well, I understand what they mean by that, and I don't want to take that away from them. I know they mean the day their precious child went to be with God and I have no doubt that child is very precious and special to God. (Matt 18:1-5, 10)

But I don't think I'm going to call the day that Joel dies his "angel day." Because there are two things that come to my mind when I think of "angels." One is the picture of fluffy clouds and wings or halos, like the "Philly" cream cheese commercials try to capitalize on. And the other is the underlying meaning of the word that is "angel" in the Bible. An angel is a special messenger from God.

And so when I think of an "angel day," it makes me smile a bit, because to me, Joel is already an angel. No halo or fluffy wings. But it seems to me that Joel has been in his own special way, bringing me messages from God.

Before you think I have flipped my lid, let me explain. This is why I didn't know where to start. Sometimes these ideas of mine seem like a dream, and it is hard to really find the beginning or end, but somehow they have left me with such a clear impression and I want to be able to describe it to you.

Today we had our church picnic. And our pastor was talking about how nature reveals God's character, aspects of His own nature. And I was thinking again of Joel. It must seem that I just have Joel, Joel, Joel on the brain at all times. In a sense I do. And absolutely any time I think of God, Joel is in there. Or maybe it is vice versa. I can't tell anymore. Because God has always used these times of turmoil in my life to teach me stuff. Or talk to me. I am not sure how to describe this, but to say that Joel is the catalyst. So instead of a small reaction, you get a big bang. Is this making sense? Instead of a tiny experience of learning patience - BOOM! Explosion lesson of learning patience.

So, picking my thread back up, I was thinking about God revealed in nature. I was thinking about canyons, and waterfalls, and mountains and valleys. I spent some times in the mountains and on the West Coast. And I was thinking about MAJESTY. I was thinking about the feelings of awe and majesty that these beauties in nature stir in me. Think about a waterfall. What is it really? Rocks. Water. Maybe some trees or ferns or moss to green it up. If you picture a rock, I doubt you feel awe. And if you think of water, you might feel thirsty, but where is the majesty located?? Or even ferns. Nice, but I'm not feeling it much. But if you picture that waterfall - AMAZING! (sorry, feeling big emotions here gets me all "capitalization crazy.")

Just like if you picture paints, a canvas and a paintbrush, you won't get much, eh? But if you view an amazing painting, it can evoke all sorts of feelings in you.

Because of the touch of an artist. And this is the oomph of the waterfall. You can't put your finger on it, or explain it, but when you see it, you know!!! There is a part in me that responds to majesty, to beauty, to the art of nature. I think it is a part that God put there, like the interlock in a puzzle. And then He made waterfalls and click! That waterfall fits into the part of me receptive to God's majesty. The part of God that is beautiful and majestic and awe-inspiring! The waterfall awakens me to that side of God, and that side of my own nature which hungers after it. The hunger has awakened in me and I desire sunsets, roses, waterfalls, rainbows, ocean depths. And underneath it, a greater hunger. A hunger for God Himself, the creator of the beautiful and majestic and The Beautiful and Majestic Himself.

Now you are wondering how Joel comes into this. Well, I was trying to explain the other day how Joel had taught me things about the value of being a human, about what was important in life, about seeing people in a different way. And it was as hard to explain as it is to capture that illusive quality that we call "beauty" or "majesty" or "art." We know it when we see it, but it is hard to find words that can possible contain a description of our meaning.

It was like trying to tell someone who is looking at a pile of rocks, a bowl of water, and a fern that these ingredients can really speak to your heart and reveal something amazing, you know?

But Joel is a communication to me about my creator. He's a different sort of communication from a waterfall. Less grand, and much more personal. He is my "angel" of sorts, he is a vessel carrying a message. A truth to be seen with the heart, though hard to capture in words.

This, my friend Tracy, is what I think you mean when you said that Graham and Joel WERE the greater good. They are the waterfall and sunset people. They can reveal truths to us, if we open our hearts. They, like our conscience, call us to be better people.

Some people can not receive this meaning or message. Not everyone who sees a waterfall sees the majesty. Some only see the dollar signs. And not everyone who looks at Joel will see the message in him and in his life. But if you look with your heart and not your eyes, you can see it. The more I practice seeing the beautiful and majestic, the better I am at receiving wonder and awe. And the more I practice seeing Joel, the better I see the compassion and love and joy of the Creator.

I understand God's love more, I feel the awe of existence more. I don't know, the English language fails me, there are not words for this...

And so I simply say that Joel has helped me to realize a lot of things about what it means to be human and loved by God. And about what is valuable in life.

I will practice awe and reverence by seeing nature and worshiping God. And I will practice love and joy by seeing Joel and understanding more of God's heart.

(I'm going to stop there, because that is the part of this whole idea that is connected to Joel. But not before I make one more note. As much as I love Joel, and as much as he has taught me, I want to say that no one has revealed God's nature to me the way that Jesus has. Some day maybe I'll write a blog about Jesus, because he's more than blog-worthy. As an understatement. I'd love to share some beautiful stuff about him. But this is not that blog.)

So I will leave you with this challenge. Go out and experience some awe, by looking at whatever awakens your hunger for beauty and majesty. And think about it all for awhile. Then go and spend some time with someone who is physically weak or broken. Really look at them. And maybe something else will awaken in you, something that enriches your life and opens your heart.

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