Thursday, March 25, 2010

Elijah the Smile bringer

I know I have written before that Elijah's journey continues, but I ever cease to be amazed how he continues to be a people magnet. I like to wear my Elijah T shirt with my favourite picture on it and with his date of birth and death and www.angelmannetwork.com. Today at the rest home that I have moved my Dad to 7 people stopped me and asked about Elijah and Angelman syndrome. One Elderly lady told me i have courageous and brave talking about Elijah. She told me she has a daughter who is 57 who had an interlectual disability, a son who commited suicide and two toher children with the challenges of mental illness, I told her she was brave sharing with me about her life. I'm not quite sure why but often people tell me how awful it must have been tht Elijah died when he was so young, and that somehow their loss is less. As I write this I am speculating in my mind that one of the reasons is that I freely speak about Elijah and the journey and this then often gives other people permission to share their loss and their grief. Not a day goes by when Elijah is not in my conversations with people. I guess I am testimony that it is possible to journey in grief and pain and to embrace it, to journey with it and to share the hope with others. If I'm an inspiration, let it be that others share those times, the grief the loss with others that they can take courage and know that there is hope. On Rare Disease Day recently I did a fundraising campaign at my work and taked about AS and the journey and I wept and share on the phone with a number of people who had recently experienced loss close to them of someone they loved on a 2 year old - with a heart defect an the other a Mum of cancer.

I am a Pilgrim amongst Pilgrims on the Journey
Darren

2 comments:

The Green Girl said...

Darren, I always enjoy reading your blog entries. I know you write from the heart.

JollyPrincess said...

Life is odd, at times we call it unfair, yet I believed life is beautiful after all. Thanks for sharing the story of cute little Angel. Where he is now, I know he is more than happier…