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!





Tuesday, January 18, 2011

My Blog List

If you look to the left, you will see I added yet another blog to my blog list on the side bar.

I'm very happy and excited to tell you that in a round about way, I have finally connected to someone who lives in my area and is going through something very similar to me. Her two girls have a different illness, but it is also genetic metabolic condition, and it is also fatal. The girls' condition is so rare there are only 50 - 70 known cases in the world. (I did get that right, right Jolene?) I'm now really looking forward to meeting her in person later this week. It is so exciting, I feel like I'm about to meet my twin!

Her name is Jolene, and her girls are Ashley and Hope. If you are interested in taking a look at their story, then you can connect via the side bar. I really feel that this was a "God thing," that God, (through and thanks to a very nice palliative care nurse) worked to connect us together, and I am very grateful and excited to have this mutual support in the future.

And it has really made me think.... who else might be in this city and going through something all alone, wishing to connect to someone else? So maybe one of these days I'll manage to figure out a website or support group or something, not limited to PBD parents, but for all parents of children living with terminal illnesses. Because for some parents with the really rare illnesses, it must be very lonely and I don't think there is a support group out there right now that meets that need. I'm sure glad to finally be geographically close to another person who really knows so well what my life is like.
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