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, January 5, 2011


Way back last April, I had a "guest" writer share her thoughts. Her name is Carolina, and she wrote a blog called "52 Days." At that time one of her children had gone on to heaven. Her and her husband had two boys left with them, Jose who is healthy, and Adrian, who also had a PBD.

I just wanted to note on here, out of love and respect for my friend, her family, and her two boys, that earlier this week Adrian also went to heaven. He was just about to turn three years old, about half a year older than Joel. I only got to met him in person once, but he was a sweet little boy. He will be greatly missed.

How can you cope when your family of five has become a family of three?

I love you my dear friend, and you are in my thoughts and prayers.

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