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 21, 2009

Here I am with my first blog, and I'm already a year into my journey...

It was last year sometime in the middle of December that we officially recieved my son's diagnosis of Peroxisomal Biogenesis Disorder in the Zellweger Spectrum.

A big name for a nasty, complicated disease, so I suppose it fits. I mean, when you hear it you sort of know you are in for a lot of messy complicated explanations about what is going on in your son's body. You can shorten the name to a PBD, but there is nothing you can do to shorten the list of the terrible things that are happening in your child's body and can not be stopped.

I do remember the day we got out of the hospital and home after three very long weeks. It was December 19th, which is now almost a year ago. I can't believe that. I have lived a lifetime since then, of course, and yet I can still almost FEEL I am back in that hospital.

I can hear my mukluks swishing along the hallways as I escaped out of the room for lunch. I can feel how the chair I sat in, and slept on when it was pulled out at night, felt. The beeps of monitors. The handwashing of every person coming in the room. (Joel wasn't contagious, just flu precautions.) The sounds of the nurses opening the door and checking in. It just all comes back to me...

But I can't really remember what Joel looked like back then... My heart and mind are too full of how he looks now. I know he has grown so much. He is sporting a lot of fine, curly hair that tends to stick up all over.

In a sense, he is still very much my little baby, though. Not only is he not walking, or crawling, he isn't sitting either. In fact, he can't even hold his head up without some support.

Right now he is very happy though. He is very smiley. He burbles, and squeals, and tries to mimic my sounds. You might not think it is much, but it means all the world to me.

That is the funny thing when you lose so much. You find out how amazingly valuable everything really was, and everything you still have is a fragile moment. You make a daily meditation to be thankful it is still here to have. You have a somewhat absurd, but natural, feeling that if you are as thankful as you can possibly be, perhaps you can prolong the moment.

And I should take this moment to say something about God. I gotta, to be fair. He has always been a really important person in my life, but this year even more. So when I say that I am thankful, that is who I am most thankful to. Even with everything we have lost and will lose, I am grateful to God. All of that will make more sense, the more I write. It's really not something that can be explained in just a few lines.

I will just say that Christmas this year is very meaningful to us. Not just because we will never be able to take a holiday with Joel for granted. But also because nothing will penetrate the meaning of Christmas deep into your heart like realizing what is truly important. And nothing will make you realize what is truly important quite the same as facing the loss of someone you would give your own life to save.

I gotta go now. My little guy is calling me. I did warn you this might get a bit deep. I do promise from time to time I might even aspire to humour. Humour is life saving in a time like this! But you know that often it is much harder for me to laugh than to cry... That is how it is for us who have sick loved ones.

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