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!

Tuesday, November 30, 2010

The Voice

Things have been good now every since September. By which I mean that Joel has not been admitted to hospital, and we've had only the "usual" sort of difficulties. We have been "stable."

So, for the most part, other than appointment annoyances and Christmas blues, I've been feeling pretty good. There is this other part though. The voice that always whispers "This good time can't last." This Sunday, sitting in church, the voice was whispering and whispering to me. I thought I might have to leave and go cry somewhere. But I ignored it away.

The truth, though, is that the voice is right. It's warning me not to get to complacent or relaxed about it all. I really don't want you to think this voice steals all my joy. It sometimes chills me. It sometimes scares me. But it's not the sort of thing that can steal my joy.

It's more that when I'm out on respite and then we head for home, the voice is whispering, "this could be the time you come home and find an ambulance in your driveway... " and I'm so happy and relieved when it's not. I walk into the house to my comfortable little boy and I hold him. And the voice whispers "This could be your last chance to be so happy coming home to his little face." And I kiss him all over his face. Sometimes I let him rest in his bed and clean (or worse, read a book!), then I fret to myself, what if he dies tomorrow, will I regret I'm not holding him right now?

This voice is not my enemy and it is not my friend. It's just a truth that I keep hearing, one that is never far away from my heart. At times I feel a sort of panic. And other times I almost feel a sense of reverence, for the moment I have.

I'm writing this here and now, because I don't want anyone to think that even though things are well and I'm doing good, I don't want you to think I ever lose sight of the truth of it all. Which is that a child in Joel's fragile condition can have a "sudden" down turn at any time. And that as far as the future goes, his time seems fairly limited. This never leaves me, even in the good times.

I'm hoping this good time last until Christmas. No guarantee. This is my hope though. One more happy and NON-hospital Christmas together.

But January scares me. I'm dreading more illness, more hospital time, and less and less of Joel. The months of January and February have not, traditionally, been my best months. I miss the light of longer days by then, and there are no holidays to cheer me. I'm afraid of how hard a down turn, or Joel's death, might be for me during that time.

I'm trying to trust God with that. I have prayed that God will take Joel home in a "good" time for us all, one where Steve doesn't have to worry about performance in his job, where he can grieve without job stress. I have prayed that God will take Joel home without a lot of illness, without a long hospital stay. That is all I can do for now.

And I stop and listen to the voice. It keeps me real, and it helps me keep my priorities where I want them. On Joel, and the rest of my family.

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