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!





Thursday, March 24, 2011

Funeral Arrangements

Of course, those of you who know a bit about grief already know how it robs you of the ability to sleep. I did know this part of it.

What surprised me was how even in sleep I didn't forget that Joel was gone. It was like it permeated my spirit as I tried to sleep. There were no cords or tubes underfoot when I woke to go to the bathroom. There was no whirr or hum of equipment. It was so silent. I almost turned on the oxygen concetrator to see if that would help me sleep. There was no soft glowing blink of a sat monitor. It was dark. And it was different.

And every time I turned or came to conciousness enough to shift position, I was aware of the changes. Something precious had gone out of our home, and even in sleep I could sense it.

Though I won't truly fathom this for a long, long time.

We are ok, though. Thanks for the many phone calls and messages and cards, etc. Someone sent us a lovely food/fruit basket. People have brought casseroles. We appreciate it. Most of all, it is just encouraging to know that people care about us and are thinking of us.

Today we did some of the funeral arrangements. We are arranging for the obit to appear in the paper, hopefully on Saturday.

The funeral will be on Tuesday at 1pm. At the Wheeler Funeral Chapel, 211 Regent Ave. W. We will have the service, and then we will let those attending get some coffee and tea and visit, while just the family goes to the cemetary for the interment. Then we'll come back for some food and fellowship, so that those who wish to get a chance to speak with us can.

I know that it is tough to get a Tuesday afternoon off of work for the funeral of someone you are not directly related to. I would love it if everyone could come, but please don't feel bad if you can't make it.

If you are a close friend or someone who worked with Joel and you can not make it to the funeral, please feel free to drop by the Wheeler Funeral Chapel at 7:30pm on Monday while we are having the viewing. I would ask that you only do this if you CAN'T make it to the funeral, as we prefer this to be a quieter time. But we don't want to exclude any family or friends, or church family so please do come to the viewing if the funeral is an impossibility for you.

Oh yes, and in lieu of flowers, donations may be made to either Pediatric Palliative Care or to the Global Foundation for Peroxisomal Disorders. If I remember the GFPD address off the top of my head, it is http://thegfpd.org I hope I got that right, I'm pretty tired. I think you can donate via the internet. And there will be a place to leave donations at the funeral.

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