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!





Wednesday, October 23, 2013

Smith family update

Someone was asking about this blog, and I figured I really should put some sort of something up here, and so I am.

I last posted when Janaia was 5 weeks old, that was a LONG time ago.  Apparently some of you want to what has been happening since then.  And I appreciate that.  Thank you.  :)

The trouble with this blog is that I don't know where to go with it.  I don't know where to go with it...

Do I continue on writing happy family stuff?  Well, I sort of hope that something previous to this date might be of help or encouragement to anyone else who stumbles on this page in a similar situation to ours.  And if my last five posts are saying how happy we are and how wonderful Janaia and Caeden are, etc, etc, then I wonder if someone like that might sort of leave without reading the FULL story...

What I mean is that it can be incredibly painful if, for example, you have just found out your firstborn child has been diagnosed with a fatal hereditary disorder and then you look at someones blog that is all about how they just had a new, healthy baby.  I know.  I remember...

On the other hand, I don't know if I want to continue this blog by continuing to record my grief.  Because I still grieve.  I always will.  Because I will always miss Joel.  I will never forget about him.  But I find myself more and more disinclined to post about it...  I'm really not sure how to explain that.  It's almost like I don't feel it is ... appropriate? somehow?

For now I will say that everything here seems very, very good to me.  With some qualifiers.

1. Janaia has in a strange way put me through an intensive grief.  She is a consolation to me.  But you don't have a consolation unless you need to be consoled.  I continue to grieve my son.  And watching Janaia grow and develop reminds me constantly of my missing child.  I feel incredible joy as she learns to eat.  And with that, intense memories of Joel, trying to teach him to eat, needing a gt, etc.  I don't mind the grief.  It is good to grieve my son, because it is good to remember, and to love him.

2. At times it is hard for me not to worry about 'little' things.  It is silly, and I try not to give em the time of day, because I know it is ridiculous, and yet a part of me resist this.  A part of me can not go back to taking for granted that most kids are healthy and "normal."  So when Janaia is a bit slower than Caeden was at sitting up, silly thoughts enter.  I know she doesn't have PBD, but there are hosts and hosts of other things to go wrong.  So I have to remind myself frequently that healthy babies are still all different and develop at different rates.  (like the time the Dr. questioned if we should watch her weight.  She is tall & thin, just like Caeden was.)

And I'm not going to waste a minute complaining about the lack of sleep.  Because I have been the happiest tired person on the planet.

I have THREE wonderful children.  I get to enjoy two of those kids every single day.  And the third one I carry around with me in thought through memories and the love I still hold for him. 

Janaia is almost 7 months old.  She is a very, very happy little girl.  I'm sure some of you would like to see some pictures from the past 6 months.  :)