Thursday, 25 October 2012

Our Fundraising Garage Sale Approaches

It's been a crazy week preparing for our Monster Garage Sale - not just the logistics of making it all happen (smoothly!) but going "public" with our journey with Amber.  While I have always been very open about what we are going through there has also been the ability to be private about it when I'm feeling tired or having a bad day etc...
Tomorrow is our big day of setting up the hall for Saturday morning's activity.  Amber will spend the day with Nana while we get stuck in transporting the HUGE amount of goods.
Since Amber's diagnosis Dylan & I have both had to change the way we think in regards to offers of help.  There is a tendency to want to cope on our own but we have had to learn to swallow our pride & graciously accept the generosity of others.  I'm still not comfortable with it but am practical enough to realise we are going to need financial support for when Amber's needs increase & also acknowledge that people don't know how else to express their care & sympathy.  The sense of community that has gathered around us is quite mind blowing.  Amber of course is oblivious to what a stir she is creating!
While Amber's mobility may be impaired she is such a smiley, happy & social little girl.  I want nothing more than to give her the absolute best love, care & experiences during her lifetime that I can & thanks to the many people in our "care circle" she is getting the best opportunities possible in light of the circumstances.

Sunday, 21 October 2012

Our First Post

Finally we have entered the world of blogging - it has taken many months for me to find the head space to put into words the emotional roller coaster ride we have found ourselves on.  Dylan has done a fantastic job of managing Amber's Facebook page but this blog is intended to share her story with an even wider audience in the hope that it may raise awareness for the disease & even help somebody else out there.  Even more importantly for ourselves, it will serve as a record of her life & a collection of memories for us to refer to in the future.

It will be a bit of a process recapping the last few months since March when Amber's hepatasplenomegaly (enlarged liver & spleen) was discovered.  It may be an even longer process for me to learn the intricacies of blogging & editing her pages!

Watch this space!