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

The Girl Scout's Motto

Living with uncertainty is hard for me. Well, I think I'm not alone in that. I know there are more of you like me out there.

I'm one of those people who always wants to know about things before hand and mull them over and mentally prepare for them. That is for sure how I like my major changes in life. I want to know about them before they happen, and really think about all the repercussions and effects on my life.

So at times I battle with myself. I have this urge, that I try not to give into to too much. And that is to find out as much as possible from as many parents as possible the whole story of losing their child. I want to know all about it, from a day, a week, or a month before hand, right through the whole thing to the funeral and after.

I've got a lot of questions, and they are the only ones who can answer 'em.
Here is a sample:

Did they have any sense it might be "the day?" Did they call lots of people to come over, or choose to be alone? What did they do with their other children, if they had them? When/how did they tell them? If it was "unexpected" did they scream, or cry or "make a scene" and how did they "cushion" that for the other children? Did they take a sedative that night so they could sleep? Did it work? How long did they spend with the child's body before it was removed? Where did it happen? What time of day? When did they start planning the funeral? What were the legalities? How did they tell people, and what order did they tell them? How did they inform all the agencies involved in the child's care?

I could go on here, but I think you get the picture.

I want to know. Not out of idle, morbid curiosity. I want to know because I want to know what it will be like for US. I want all the possible scenarios. And then maybe I can dodge any pitfalls lurking. For warned is forearmed, in my books. Like somehow there is a "best" way to handle all the death stuff involved...

Kinda like when I got married. I had a lot of questions for the married folks about what it might be like. What was I in store for. And how could I be "mentally prepared, " so there were no bad surprises, so that I could get the best out of my marriage.

And in the case of marriage, most people are more than happy to oblige. It's a bit more awkward asking people about the death of their child. As an understatement. So I try and hold myself back. I can't afford to lose any friends or make any enemies.

Of course, in either case, there is limited value in the information passed on. Because marriages are as different as the 'snowflake' people who combine to create them. No two are like, because no two people are identical.

And so no two experiences with death and loss can ever be the same. No matter how much I knew, I'd never get the answer to the biggest question I have: What will it be like for US?

Still, it is comforting to get that pre-marriage counselling. And it isn't totally useless. There are always similarities in some of the "big" stuff, like fights over money, or "the rules" for good disagreements.

I wish there was some form of "pre-death counselling" too. Yeah, maybe that sounds ridiculous. Maybe I just need to let go of it and trust God to handle out the details. But it is hard for me. I can't help it. It is the "Girl Scout's Motto." I always want to "be prepared."

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