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!

Saturday, April 3, 2010

P.S. on DNR's

Well, in case I forgot I was human, and make lots of mistakes, I find I must correct two things in my last blog.

First of all, as my husband pointed out with exasperation (as he had told me the story many times and I still got it wrong, so he made me read it in his history book) I made a mistake in my story about the abbot. I had to go back and correct it. It was NOT Muslims he was fighting. It was Cathars. Cathars were a break off sect of Catholicism and were considered heretics. It doesn't in any way change the point I was making. But now it is historically correct, and please forgive my laxness in not double checking my facts. :)

Second, and more important, as I thought about my blog I started to feel very worried. Terrible, in fact. I was worried that someone who read it had already made some choices regarding DNR's that were different from mine. I felt terrible thinking that these persons unknown would think I was in any way criticising them.

Let me clarify: Each person is different in their story. So, of course, I understand that what is true for one is not always true for another. If my husband suffered a heart attack, I'd have them restart his heart!! There may come a time where putting Joel on a ventilator does not seem to be respecting and protecting his life, but rather just prolonging a difficult and painful end.

So please understand that I am in no way trying to make a blanket statement of what is right or wrong for anyone else in their situation. I was just explaining the principles that helped me to make a very difficult choice. And as you can read, it was so difficult for me that though I made the choice in my heart, I have not yet been able to articulate it!

1 comment:

  1. Thanks so much for the vulnerable way you've shared about the DNR decision. My heart goes out to you, what a decision to have to make. Our prayers are with you, I'll be trusting that our Father will give you all the wisdom you need when that time comes. I'm behind you 100%, and appreciated so much the throughtful way you worked through some very difficult issues. Grace and peace.