Tuesday, June 14, 2011

New Blog Site

Hi Followers and readers - I have moved the continuing of this blog to the new following Site


Please visit and subsribe at the new site.

Monday, October 04, 2010

Dancing in the Rain

"Life is now about waiting for the storms to pass but learning to dance in the rain."
I am sure I might have heard this saying previously, but it had it's most impact was on the order of service for the Tangi of the wife of a friend earlier in the year. It speaks of the Journey and also has been a mantra for me to keep going on the Journey rather than waiting for things to pass, but even to find joy in the midst of the pain. I know that that joy and pain seem to be diametrically opposed and yet it is possible to experience it. 

In planning for the Angelman Syndrome conference that took place here in Christchurch this past weekend, the first thought for a theme came to mind and thus it was

And so it was - what a wonderful conference working with another family here in Christchurch - and to see it come to pass. I was able to secure Professor Chris Oliver from the UK to be the keynote speaker. Following his wonderful presentation about Challenging Behaviour in Angelman Sydnrome - which included work that he and other staff are doing on recognising the stress and pressure on parents with AS, my contribution to the conference was mentioned and I was presented with a gift - pic to come which is a glass koru - (the koru is the Maori name given to the new unfurling fern fron and symbolises new life, growth, strength and peace)
I got up to accept it and speak briefly and dissolved into tear for a few minutes - I was able to honour Elijah in this public context and acknowledge it is my pleasure to spend my energy - to invest in his legacy. I know there were tears in more than a few people's eyes and was encouraged by the number of people that spoke to me about it and how they are inspired by our Journey.

It was great to meet with both professionals and families to continue to share the Journey. Thanks Elijah - you rock my son.