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, March 31, 2010


This time I think it is really, truly, actually happening! Though I have been waiting and wondering for months now, it seems like it is actually going to happen.

Joel is getting a tooth.

I don't know why that makes me absurdly happy, but it does.

I don't know why, but one thing that bothered me was the thought that Joel might die without a single tooth. It isn't really rational, I suppose, but these things can sometimes become supremely important and let me tell you

WHEN MY BOY GOES, I WANT IT TO BE WITH AT LEAST ONE TOOTH!!!!! I just didn't want him to die toothless!!

I feel like we have just won a small lottery. There is a tooth, I can feel the sharp edge, and the gum there is a bit "larger" than the other side. It is on the bottom, one of the front ones.

Maybe this sounds crazy, but it does seem like a victory! In just a few weeks, it will be out and it will be too late for him to die toothless! Ha Ha Ha! It is funny, but I feel I have won a battle with an enemy!

Of course, God willing, he might get a lovely full set of teeth yet. We don't really know how long we have with him.

And he can't EAT with it, of course!

So why all the joy? I suppose that what it really feels like is that he has passed out of infancy and into toddlerdom. He can not do any of the regular toddler things. No "toddling." No words. No stacking blocks, or any of those things. When did my baby turn into a toddler? Nothing ever changes for us. We are in the same place we were last year at this time, only HAPPIER. (don't get me wrong, REALLY grateful for that.) Still, as a mom... He has made no progress in holding up his head, he is not any closer to sitting, he is still just in the babbling phase, he still doesn't reach out for toys... Well, feeling you are in the same place a year later doesn't exactly feel great.

But today I am sure that something has changed! There is a TOOTH coming out! YAAAAAY Joel!!!

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