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, June 12, 2010

Happy Joel

Anyone who gets to this blog via my FB page will likely have already seen this video, but in a longer version. The original was over five minutes, but I could barely get what I did on here. I wanted to put it on here for those who read my blog and are not on my FB. Some of you have never seen Joel, other than by picture, and I wanted you to get a chance to "know" him a bit better. The video is from April, so it is pretty recent.

It is also why it is wise to be cautious when speaking to me about "quality of life." I mean, if you are questioning whether Joel has that. Because this video speaks louder than any words I could ever say. If you watch it with your heart, you can clearly see that Joel has been very much enjoying his life, even though he is sick.

There is this info I came across somewhere, and now I can't remember where. In fact, it could very easily be one of those "urban myths" that float around. So feel free to take it with a grain of salt. This info was a study done of people one year after one of two life-changing events had happened. Either they had won a large amount of money in a lottery, or they had been in a serious accident and become disabled. Does this ring any bells? The more of you have heard it, the more likely it is an urban myth.

Which doesn't in any way detract from what I am going to say. The results of the study showed that the people who had been in an accident were much happier than the people who had won all the money. This is very nice for those of us who feel the pinch of pennies, as we can feel better about ourselves, instead of jealous of those with all the dough.

Urban myth or no, I can believe this is true because I have felt it in my own life. The conclusion of the study was that those who had been in accidents were happier because they had been overwhelmed by help and support from people who obviously truly loved them. They had lost something, but through it all they had learned a source of real joy and happiness: the people that surrounded them and stuck by them through all the hard times.

On the other hand, those poor devils who had the misfortune to win all that money had discovered a different and harder truth. They had discovered that money will draw all sorts of "friends" into your life, and not all of them care about you. Plus the money was just a constant source of decision making situations and all the stress that goes along with it. It didn't make them happier...

I don't know anything about lots of money. I've never had the curse of being so wealthy I could no longer be sure why people hang around me. I have always known that people who hang around me must really like me, because they sure won't get paid for it!

I do know something about going through something hard and life changing though. I can tell you that it truly does bring a special joy with it. For every friend that I might have lost due to them being uncomfortable or just too busy to deal with it (or whatever), I think I have gained two more friends who not only seem to like me in spite of myself, but also who have proved their worth by sticking by me even in unpleasant circumstances. These are the true "Diamond People."

They are a big blessing. And they sure add so much to my own quality of life. And when I look at Joel, in my lap with that smile that seems to light up not only the room, but the universe (sorry, parents of dying children must be given some artistic license), I see a little boy who has only known the truth about quality of life. Things can bring us comfort, but they can not bring happiness if it is not something we already have. The real quality of life is in loving and being loved. Just take a look at that video and try and tell me that is not the truth of it.


  1. Holy moly. That was amazing. I LOVED hearing him laugh! :)

  2. Great seeing both of you laughing like that!
    - Zac

  3. Great video! We never did get a smile (let alone a laugh) out of Makenzie and yet, for some reason, I still don't question whether she was happy--I know she was. There is nothing better then a happy kiddo.