A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Wednesday, June 20, 2012

Day One

I don't know where this will lead, but I hope that writing will provide an outlet.

It's been about a year since my world was turned upside down.  When my precious little boy officially received his diagnosis, and unfortunately, a death sentence.

Where have I gone from then?  What have I done?

I'm not totally sure.  But I know that I will never be the same.  Life has resumed it's normal course, but it feels wrong somehow.  I feel like I need to do something, but I have no idea what, where, when or how.  I have no desire to continuing living my life the way it is now - get up, go to work, come home, do nothing - repeat.  The work piece is the one that needs to go, well that and the do nothing piece too.

I have almost no creative skills - so sewing, scrapbooking and the like are out.

Advocacy work is great, and I enjoy it, but getting paid is the issue there.

But I need to do something, so for now this is it.....


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