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!

Monday, December 28, 2009


My Christmas was so wonderful, it seems a chore to come back here to this blog. Because this blog is so....serious. And sometimes it is about things I'd really just like to escape from. There are a few things kicking around my brain, and I think this time I am going to chose one that is... "happier", for lack of a better word. I'll save some of the other stuff for another time...

So, here I am getting all deep on you once again, and also, pretty personal. I have to be pretty vulnerable to get this stuff out. I hope you'll understand.

Every time I think I've got some sort of "plan" for my life, it seems to take a big turn. Sometimes that is for the better. Usually it involves some sort of sadness or loss. That is how it is, our "plans" are precious to us, and painful to lose.

When I married Steve and we decided to have children, I knew I was changing the direction of my life. Let me go back a bit to explain...

Before Steve and marriage and children, I knew what I was supposed to be doing with my life. I have always firmly believed that God put us on this earth to make it a better place, and we sure have our work cut out for us. I have always had what I can only term as a passion for working with children/teens, and for working with people caught in cycles of poverty and abuse, and for native people and sometimes I have been really lucky and all three of those things come together. Like when I was teaching up at Oxford House Native Reserve and I got to have a youth group and work with teens, alot of whom came from pretty messed up families.

Then my life took one of those turns. I thought that having children was a brief pause, after which, when the children were old enough for school, I could find another place to do what was my passion. There is no short, sadly, of children or teens with no one to give them the love and attention they need, or adults either, for that matter. I knew I'd be able to teach part time, or volunteer at a soup kitchen, or work with a youth group agian very soon.

Then I had Joel. And EVERYTHING changed. Now, I really can't see how I will ever be able to work in any of those places, even on a volunteer bases. I don't have much time or energy for that, and with the up and down nature of Joel's condition, I don't know if I could commit to anything anyway. I don't know what will happen when Joel is school age and gone during the day, but I do know my evenings won't ever be free in the same way... And Joel is just such a full time job. Maybe it will get easier, I don't know, but for right now, it is hard to believe it.

And the only way I see for this to change, is for Joel to die. (Sorry if that shocks you, but I'm not trying to protect your sensibilities, I'm just saying it the way it is.) That would be freedom bought at a most terrible price, one I am in no way ready to pay.

You must be wondering where all this is going... There is a point coming up. Let me give you a heads up on how it goes when something terrible happens, in case you have never been through it. (I'm sure that most of us have) You start thinking some really funny stuff, and I don't mean funny "ha ha". I mean more like bizarre, queer and sort of unhealthy in the way that the green stuff growing in the container at the back of your fridge is bizarre, queer, and sort of unhealthy...

One of those things you will think is that you have "done something" to cause this thing to happen. It doesn't matter how many doctors, nurses, counselors or loved ones tell you this is not true. It doesn't even matter if you know in your head this is a bunch of rubbish. You will find yourself going there despite your best efforts, and maybe you just should explore the idea in all its absurdity before you can banish it. I don't know what will work for you, but it is something I had to work through.

Was what happened to Joel a "punishment?" Did I screw up in some way? Most obviously, was I wrong to marry Steve and start a family? Did I forsake what I was "supposed" to do, and now it had been taken away for good, and I was left here in this terrible situation? Oh, the dark corners of your mind!!!

I am not really sure how to explain to you what happened as things went along... I can tell you that I have found other meaningful things to do, like be there for all the wonderful friends I have met online who are stuck in the same painful, terrible place I am: they have had a child with a PBD. This was a big comfort to me, to see that God still had a place for me to be myself and to be a comfort (hopefully) to other people. In fact, no punishment at all, but rather, a very big privilege.

And the other thing?? Well, this blog is becoming very long. So I will finish it up in a part two, and you can read the rest later!

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