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, August 5, 2011

Conference

It was, of course, over too soon, and hard to say good-bye.

But the conference was very, very good.  I crammed as much talking and being with other parents as I could into it.  I was up until at least 1 AM every night we were there.  I skipped pretty much every session, but the grief one, and just hung out. 

Don't get me wrong, the sessions were good.  I just wasn't there with it all, as far as getting information goes.  One of the biggest reasons I missed the info sessions (aside from so I could chat with other people) was because I couldn't help the tiny uncertainty I had that I would hear of something I had missed doing, something that might have helped Joel.  I already have enough things I wish I had known about/done/figured out, etc that make me feel sad, so I have no wish to come across any others.   And much of the information was good for new parents, but quite a bit of it I had already heard or learned before.  Which means: old info = redundant, and new info = feeling bad.  So I skipped out.

But as I said, I crammed every second I could with talking to parents and seeing their kids.  It was so good to be face to face.  And it was so good to talk about Joel, Joel, Joel, for about four days straight.  None of the other parents ever gave the impression that they had just about had enough of hearing about him, either.  The other PBD parents are so great.  So they let me feel a part of it, and go on and on about Joel, in a way that I never otherwise get to do.

And you know what?  After the fourth day of it, I thought, whew... I think I have said enough.  Now what can I talk about??  Not that this feeling will last.  In a couple more days, I know I will wish to talk about Joel more, but it will be just as hard to do as before the conference, and so much of my "talking" about Joel will be in the form of silent longing for him, memories, and all that sort of thing.  Still, it was an incredible gift to be able to talk about my child to my heart's content to other people who understood, related, and didn't mind, because they were talking about their kids to their own heart's content too.

I didn't feel as sad as I thought I might, either.  Oh, not that I didn't feel sad, or that it wasn't painful to see other children like Joel, to be at a conference about them, and be sans Joel myself.  I just had expected to be sadder.  In truth, most of the time I was so happy to see my friends, and so happy to see the other children, that the sadness seemed small by comparison.

The conference was a wonderful gift.  And we owe it all to the Brady Colbert Foundation for paying our way.  We are very grateful.

I have a lot more to say about it, but as soon as we got home, I was totally wiped out.  Whew.  So much emotion and stuff.  Steve and I are so tired now.  So I'm doing a bit of laundry, we are buying some groceries, and we are just going to rest for a couple of days.  And I will get back on here and write about Joel's birthday a bit later.  And put up pictures, including one of Joel's new box for his memories.  And some other stuff.

For now, I just wanted to share that we are back, that we loved the conference, it was good for us, and everything went just fine on our trip.

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