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, February 10, 2010

Morbid: Part One

It's been awhile since I wrote here, which is odd, as I have about 5 different sorts of blog topics in my brain. Or maybe that is the problem!

Actually, it is more likely the fact that we have had a really nasty tummy bug at our house, and Caeden is the only one it missed. We are all still feeling the effects, and for me, those effects are not just physical, but mental and emotional. So on all counts, I have been "knocked out" and unable to muster up what's needed to put thoughts down.

And what thoughts illness brings out! The truly morbid ones, that's what. I don't know what it is about being sick like that, but the illness seems to affect body and MIND too. And it is not just my own sickness, but Joel's too. A double whammy.

Because Joel being sick always brings out the nasty thoughts. It gets so gut bustingly frustrating that I really CAN'T seem to move to a happier place for any length of time. Joel is doing well for a while and I start to feel better, to relax and let go of that nervous wire of tension that runs through my life and then - bam, he is sick again.

And why is that so bad, when every child gets sick now and then? Well, aside from the fact that Joel seems to get sick about 5 times as often as Caeden, is the heart-rending, and seemingly inescapable thought that THIS is precisely how Joel will most likely spend his last days.

Every time he is ill, the thought is there, haunting me day and night. I know that many (not all, but many) of the children with this illness will die from "respiratory failure" which most likely means that their bodies just declined until they could no longer fight off an illness. There are so many unpleasant ways to die with this disease, and being sick is just one of them.

So it's not that I think that way to die is especially horrible. Because almost every way to die from this disease is horrible.

It is just that when Joel's sick, I can't seem to escape the thoughts.

The thoughts that one day he will be sick, like he is now, and nothing can help or ease him. He will gradually sink further and further into illness, until there is so little of him conscious there. And then he will be gone. That is hideous to me. That in his final days he will feel worse and worse and I will not be able to comfort him.

And then I see, rising up before me in my mind's eye, row after row after row of mothers. Mothers from all ages and places. Millions of them, all who have lost their children. Because if you look throughout time and space on this planet of ours, you will find that the majority, (yes, the majority, not the minority as it seems here in this time and place) of mothers, of parents, have lost a child or children.

I see that sea of faces and I am just filled with sadness. It overwhelms me, the pain of humanity. So much loss. So much grief and longing.

And why should I be any different? About any of it? Why shouldn't I lose my child, when so many mothers do? Why shouldn't sickness visit us, or why shouldn't we lose our job or our home? Why shouldn't a flood wash us away, or an earthquake take everything from us?

There is so much sadness in the world, and sometimes I feel it all threatening to overwhelm me. These are the times when God seems far. Because trouble and pain seem so random and, well, so powerful.

These are the times when my own troubled thoughts threaten to pound through my brain like the surf until it just crumbles away like a sand castle.

Yup. Morbid. Plain and simple. The illness in my body is also an illness in my mind.

And I know it, too, will pass in time. Maybe I need the application of some mental "antibiotics." It isn't that anything I am thinking is untrue. Every single thought is spot on. It is just that it is not the whole story...

There is another part to it, and it is the story of Jesus. I am not done with this topic yet, but I am done with it now. I'll write part two another time.

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