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, June 17, 2010

An Update, and a word of Caution

My dad is starting to feel a bit better now. It was rough going for him, for a few days. Still waiting for the final results, but the prelim looks good as far as if the leukemia responded to the chemo. I sure hope so. I'd love it if my dad could get out of the hospital and if he didn't have to do another "induction" round of chemo. Those are not fun.

We brought Joel to the emerg on Sunday, but he "just" had an ear infection. So he's been on antibiotics and he was pretty happy the last couple of days. In fact, Tuesday was a really good day for me. My boys were happy. I had respite. Caeden and I played in the yard in the pool and I got to do a few other things I wanted to do. And Joel was pretty smiley.

He has a fever again today, though. Still on the antibiotics, and I'm hoping that it is not the tummy bug Steve has. I sure wish we could have a couple of disease-free months, but that just doesn't seem possible for us anymore. I hate all the sickness. It takes away our "smiley times."

I have been thinking about this blog and what will happen when Joel passes away. Then I thought, "Hey, are my blog readers in denial? They do know that one day Joel is going to die, right?" I guess that is a funny way to put it...

I just thought it might be easy to get into reading this blog and sort of forget about the reality behind it. I might have lots of warning before Joel dies. It might be years. Or it could be tomorrow. Seriously, this disease is that way. I know of children who had an observable decline and there was lots of "warning." And then I know of children who just... died.

I sort of thought I should warn you about that. I know I have written about it before. But this time I am warning YOU. One day you might read this post, and what it might be telling you is that Joel is gone. And you might be really sad. Just a warning.

I sort of felt I should say that. Like I did when we hired our respite worker. She is really great. She appears to like and care about my boys, and what more could I wish for? The first time we met her, I warned her that if she decided to take the job, she needed to be aware that one day Joel would pass away. And that might be hard on her. I felt it only fair to warn her. She was taking on a job where she might get pretty emotionally involved, and I felt it should be something she weighed when she made her decision. The death of a child you love is very hard.

To her credit, she took the job. Sometimes now I watch her play with Joel and talk to him. I wonder if she has maybe forgotten he is going to die one day. I wonder if it will be a terrible shock to her, and if she will regret taking the job. Maybe I worry about her a little bit. It was a pretty huge thing we asked of her, to come into our house and love our boy even though he was going to die. I'm not really sure that sort of thing is covered by modest amount she gets paid...

And so now I am wondering about you...? I want you to love my boy. But remember, it's going to be really sad when he's gone. And this blog might sort of end abruptly when he goes. I'm not sure what will happen after that day comes... I might not be able to write anymore. So keep that in mind, so that it doesn't take you completely off guard.

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