Peroxisomal Biogenisis Disorders, words that regularly haunt my day. These words might not mean much to many people but these words are the reason I lost my baby girl. Anyone who has been following Ellie's blog will know what a tough and emotional journey we have been on and the loss of a child is pretty indescribable, so I wont go there just now.
I am lucky enough to of had support from an amazing bunch of people via Yahoo groups and Facebook who inspired me during the last 8 months and I guess I felt I needed to give these people a little nod. They are all working hard to prepare for a big conference over in the States and have recently launched the Global Foundation of Peroxisomal Disorders website inorder to bring more families together who are affected by this disease. http://www.thegfpd.org. These families are amazingly brave and special people who devote their lives to their sick children.
As if I'm honest, right now I know I should be still supporting them, and checking out their caringbridge.org care pages to check on their little ones, but I don't, because I can't, not yet.
Just like I can't re-read the early blog entries or look at the thousands of pictures I took of our little girl because it's too hard, it just washes over me, sadness and despair.
So instead I tidy and clean and create, because at the moment thats what grieving looks like for me.
But still, I was brave today and I looked at a post from Sarah Danielson about her little man Jordan and it made my heart soften and brought a smile to my face. So I'd like to share the article with you, if you're interested.
http://www2.highlandstoday.com/content/2011/apr/25/251727/boys-wishes-come-true/news/
The look on the little boy's face is amazing :-)
ReplyDeleteyou are truely amazing.xx
ReplyDeleteThey say a picture paints a thousand words, and this one certainly does. Xrx
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