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!

Thursday, March 3, 2011

All over the map

That's the best I can describe myself today. I don't know where I'm at or where I've been or where I'm going.

This morning little baby Ellie died, her blog is on my sidebar. I'd say that "bummed me out," but that doesn't really seem the best way to describe it and I don't know if there is a word for it. Yes, I cried when I found out, but it's not like I spent hours sobbing. It's different, it's a more internal, almost visceral reaction. It's a strange feeling, when I find out one of the PBD kids has died. I feel restless. I feel lost. I can start about 10 things but have no desire or drive to finish any of them. I wander around. I feel anxious. There is an itch or a pressure on the tip of my brain where I can't reach to relieve it. Or maybe the place with the pressure is in my heart, I don't know. But I don't know what to do with myself on these "death" days.

And I know that this is a precursor to how I will feel for months after Joel is gone. The same restless, lost feeling. The same pressure or itch I can not relieve. Yeah. It's not a high scoring day for me emotionally.

Then I have to say that Joel has not been doing great the past couple of days. I'm not sure, but I wonder if he has another buckle fracture somewhere, or spinal compression. Nothing is obviously broken and there was no incident where I noted he was hurt in some way. But he seems to have pain, particularly when he is moved. I'm treating him with morphine, and trying to decide what to do.

He's had so many x-rays, I'm surprised he doesn't glow in the dark. And though he's had 3 buckle fractures and a couple of compressed disks, he's never had a break that could be casted, and I feel pessimistic about what could be done, other than pain meds. So I'm not really liking the idea of bringing him in for pain with an unknown source. That, in itself, is an uncomfortable or even painful endeavor which I would go to any length to avoid if it's not going to help anyway.

Pediatric Palliative Care is coming out tomorrow for a home visit. They are "another set of eyes," and can help me assess Joel and decide what to do, even though, of course, a home visit won't be enough to confirm or rule out a broken something or other.

I can manage the pain with his morphine, so that he is, for the most part, comfortable. But I can't make him happy, playful or alert, which is hard for me. Instead, he is spending his days sleeping, or dosing. I'm glad he is comfy and not in pain. But still, it hurts to see him just sleeping or dozing in a trance-like state. In fact, I hate the way it is today, I hate days like this.

So, my day is all over the map emotionally, but not in a tourist seeing the sights kind of way. Not in a "I went to the zoo and then I went to the art gallery and came back with a shirt" sort of way. More in a "mines of Moria and tour of Mordor" sort of way. If you don't know your Tolkien, I mean more like wandering in the dark and dismal and then for a change going to the stressful and uncomfortable sort of all over the map kind of day.

I know bad times are coming for us. I know bad times are coming for us. Drums, drums in the deep. You know that I know that God is faithful. These feelings don't negate my certainty in Him, and in His ability to go through it all with us. But the knowledge that God will help us and go through it with us also does not completely negate these feelings... I feel at peace with the future, at the same time I can not help feeling some dread about it.

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