rainbows & earthquakes: May 2013

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!

Friday, May 10, 2013

God is Gracious

I'm trying to write this in a spare moment. No, not a spare moment. No moments are spare around here. A stolen moment more like. If I'm writing this, it is because I stole a moment when I should be sleeping, or cleaning, or doing laundry. But a girl's gotta do what a girl's gotta do. I have been meaning to write this blog for a week now, and I don't want to wait a moment longer.

But I'm going to have to keep it much, much shorter than I wanted to. I had a lot I wanted to say, but man, a baby can sure keep ya busy!!

So, last Friday we finally got hard core answers on if Janaia also has a PBD. Two of her blood tests came back NORMAL. The third didn't come back yet, but it is really not an important test anyway. The definitive test shows she is PBD FREE. My precious girl will not suffer and die from a peroxisomal disorder.

I needed to give you all the good news. Like I already said, I wanted to write a lot more. But life with a five week old baby is proving a bit crazy, so this will have to suffice for now. I think you all can read some between the lines anyhow, to see how I feel about this news. It's pretty wonderful.

Thanks for your caring and your prayers.

More if and when life calms down a bit. :)