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!

Wednesday, December 29, 2010

Laughing Joel

This video is an "old" one, and many of you have already seen it if you are on my Facebook, or if you live anywhere close to me. :)

I wanted to put it on here for those of you who only know Joel through my blog. This is my boy at his happiest and best. Not at his most "able" as by the time this video was taken, he had already lost most of his head and torso control, and was gt fed. But this is him in his top form of interacting and being happy.

The video was taken in March, and is 10 months old. While Joel still does smile, does even sometimes laugh and occasionally makes his "babble" comments, he has not been this interactive or animated since the summer. This is my favorite video, the most beautiful picture of who Joel is, but it is also very painful to me to watch, as it is a reminder of the sad changes that have slowly crept up on us. I hope when you see it, it helps you see and understand, and love my little boy.

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