Welcome

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..







WARNING:







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!





Sunday, March 21, 2010

Loss List, in reverse

If you couldn't find my last blog, it appears waaaay back on Jan. 8th, when I first started writing it. Any of you fellow bloggers know how to put a blog where you want it, instead of just published according to the date you started it??? It was called "Grudges."

Awhile back I put up a blog called "Loss List" where I listed just a few of the things that I have lost through Joel's illness. This loss list is in "reverse," because it is a list of things I am happy not to receive. Yup, you heard me right. I'm happy NOT to have these things.

This list doesn't undo the pain and loss in our lives. It doesn't really "make up" for what we are suffering. And on the really bad days, it will be very small comfort.

Still, there is another side to all of this. Another way to look at things. I am still grateful, because even in all the pain, there are things we are spared.

So, this is a list of what Joel has been spared. I hope you don't find it melodramatic, because every thing listed here is something that thousands, or even millions, have gone through. I hope you don't find it depressing, in that instead of listing the great things, I'm listing the bad things that don't happen. But maybe, when we are tempted to say "why me?" it is good not a bad thing to think of these things. Maybe even get off of our self-pitying rear ends and do someone else some good...

So here we go...

Joel will never have his marriage ripped apart by a vicious divorce. He'll never worry his ex is going to get the kids and turn them against him, or sit alone in a small apartment thinking about how his vows crumbled like a dry biscuit.

Joel will never be an alcoholic. He'll never be unable to remember the events of the previous week, or have the shakes. He will never ruin his life, and even worse, bear the guilt of ruining other lives by driving drunk and killing someone.

Joel will never lose a successful career and happy home due to committing a white collar crime and being caught. He will never have to spend time in jail.

Joel will never be a confused teen from a dysfunctional home, who runs away to the big city full of hopes that are dashed as he ends up trapped in a life of addiction and prostitution.

Joel will never love an abusive woman. He won't suffer under emotional devastation or physical hurts from someone who is too broken to know how to love him.

Joel will never be kidnapped by military groups that force him to learn to hate and kill before he is fully grown. No one will slowly rob him of his soul by brainwashing him and forcing him to commit acts that even adults should not have to see.

Joel will never watch his family slowly starving to death around him, no matter how hard he works, he just can't raise enough to feed them, and he knows that the littlest one won't make it.

Joel will never spend his years in fear of when an abusive father is next going to explode and hurt him, or his mother. He will never be emotionally crippled by this, twisted by his experiences so that he doesn't know how to be a husband or a father.

Joel will never be ostracized because he is the "wrong" colour or race. He will never feel the scorn, disdain or hatred of another, more powerful group of people. He will never suffer the injustice this causes in his daily life, work place, choices.

Joel will never grow up neglected.
He will not be one of the MANY, MANY children in this VERY CITY for whom many of these things are true:
He will never be three years old roaming the streets at midnight.
He will not live in a home where the mattress he sleeps on is used, at times, for his mother's prostitution.
He will never go to school with only a parka, and no shirt underneath, and be so embarrassed when the teacher asks him to remove it.
He will never be hungry most of the day, and come home to see the welfare check was used to buy alcohol.
He will never have to be the parent to his younger siblings, because the parents are more like children themselves.
He will never feel the terrible emotional pain felt by these children when their parents just plain fail to love them, in all the ways that parents should.

Joel will be loved. He will be held and cuddled. He will never have to cry without comfort. There will be singing, and smiling, and laughter. He will be kept clean and warm and secure.

Despite all the suffering in our lives, I have seen many children who are not even close to as happy as Joel is. He has lost many experiences, but not all of those experiences are ones you'd want to have. Physical suffering is a horrible thing, but there are other, worse things out there. Things that not only hurt us, but twist and deform us.

When ever I feel sorry for myself, or when Joel's suffering starts to enrage me, I think over these things I've written. They put things into some measure of perspective.

Because in many ways, Joel has a very blessed life. I am so grateful that I get to be the one to love him. I will make sure that he always feels this.

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