After a year of abstinence from blogging – give or take the odd guest blog for Swan UK, a few blogs written but not published, and a handful of Swan Twitter Takeovers – it was with slight trepidation that I turned up on a cold January Saturday morning, to a Swan bloggers workshop in Birmingham. As a relative novice in the blogging world I felt a little nervous that I did not deserve a place around this table of award winning, amazingly talented and highly committed Swan Bloggers – needless to say I need not have worried….
The welcome was astounding – people whose trials and tribulations I have followed online, I was meeting face to face for the first time and immediately felt like old friends. Hugs were gratefully received, stories shared and the collaborative brain power of the group resulted in some fantastic ideas for ‘Undiagnosed Children’s Day’ in 2016.
Needless to say I rediscovered my blogging mojo….I am inspired and I am back!
After a week of debating my blogging platform, exploring different blogging approaches and generally tying myself up in unnecessary knots I have decided the following….
‘The World of Gorgeous Grace’ will live on and I aim to tackle two things. Firstly, to blog about my daughter GG who continues to inspire and amaze me, and to whom I owe a voice in the absence of her own. GG is undiagnosed. GG has a host of challenges. I am in a position to raise awareness, call out when things are not right, and try and make a better world for GG along with all the other gorgeous Swans out there.
Secondly, I am determined to make a noise about the poor co-ordination of services, this being a key theme of the discussions had at the aforementioned workshop. Recognising that this is an issue for all disabled children, it is exacerbated for those without a diagnosis – no label to hang our hat on. To this end I have set up a meeting that I hope will be the first of many with people who can make a difference. This first being with my MP – I am hoping for a positive response as he has joined the recently established APPG for undiagnosed children. Did I mention that the meeting is in March? Leaving just a month to pull together a picture of how disjointed our experiences are and the potential cost benefit of greater co-ordination. I had better get cracking!
My final word is a huge thank you to the group of awe inspiring women who form the Swan blog group, and the team from Swan who support us through this quagmire of a journey. I promise you at the next meet up I will join in with the wine.