(the former – unfortunately SBH Qld is no longer) SBH Qld (Spina Bifida Hydrocephalus Qld) (www.spinabifida.org) is Chasing my Dreams ‘Charity of Choice’ – this organisation has been, and is, such a wonderful support to me, and countless other adults, children and families throughout Qld. They have literally been a lifeline to me at times, and have taught me so much about myself over the years…I know I wouldn’t be the empowered woman I am today, if it wasn’t for the invaluable support of SBH Qld. It makes perfect sense to choose to support SBH Qld whenever I can, to ‘give back’ in my small way, for the huge role they have played in my life!
One of the unique ways of support we are blessed to receive from SBH Qld, is through their GOALS program (Growth Opportunities Access & Life Skills). These are ‘personal development’-type programs based on a number of different life ‘scenarios’ – Younger people, Women, Men, Life Skills/Moving out of Home etc – each program is individualised to focus on these different areas.
SBH Qld have just introduced a brand new pilot program to the mix – “Mind Matters” which focuses on the actual effects which spina bifida/hydrocephalus has on us. The Program was held between 17th-20th September, 2013. What I love about these GOALS programs is that you are in a room (usually 12 participants) of people who really ‘get it’ – because they are living with it, too – other people can have a sense of understanding…but being in a room of people who REALLY ‘get it’ – so empowering! You are not just being taught the information, without having people there who actually know what it is like to live day to day with spina bifida/hydrocephalus. I consider myself VERY blessed to have been chosen as one of the select few, to participate in this pilot program! We were taken to Tangalooma Island Resort for the program – but, it is *definitely!* not an ‘island escape’ …haha…we are there to WORK (put it this way, I came back from the program a week ago, and I am still recovering!…and not from partying on the Island! There was a lot of information to take in..and also emotionally its a lot to deal with as you are confronted with the raw reality of living with these disabilities – yes we live with them 24/7..but in day-to-day life we just get on with it…on these Programs we focus totally on the disabilities themselves). The beauty of ‘going away’ for these Programs is that you are completely away from your everyday life, it is a very safe environment where we are encouraged to go deep down inside of ourselves..and we know that inside that room, it is all strictly confidential….yet outside of our comfort zone because of the nature of reaching deep down inside, where we may never have dared to reach before. We are also faced with cold hard facts….which is very confronting – but well worth it! Working on yourself is hard work, especially if you are fully committed to doing the work…but it is very, very beneficial!
I have come home exhausted, but feeling SO much more empowered, informed, and my mind full of a whole lot of new strategies which will help me (and us) live with spina bifida & hydrocephalus. There were some things, which even at 43yrs of age, I was completely oblivious to in regards to the disabilities – in particular some of the effects it has on us (along the lines of brain function, and energy levels, and sometimes doing simple tasks which Ive always struggled with) – I have often put it down to the disability to a point, but also have thought, its just my ‘makeup’ as a person, as Tania…but now I know 100% that, the way that I am affected, when Im struggling, its not ‘an excuse’, it is a concrete reason why I struggle with certain activities in life, which others would find the easiest task in the world, to do. Knowing this has instantly taken a lot of my frustration away….its more ‘acceptance’ now, which is awesome! I have also come away with some strategies to deal with when living in society – eg. Sometimes when others look at me, they may just think it affects ‘my legs’, but no these disabilities actually affect my general functioning as a person, from other parts of my body which are affected….this is one thing which is often misunderstood from others…and I now have ways to deal with this, when it comes to interacting with others, in life.
OH…and I have some exciting news!…In free time, which we were very blessed to be allocated a little of this so we could enjoy Tangalooma Island Resort itself, outside of the Program), I managed to sneak in a ‘tick’ off the List – #86. Snorkelling!!
WOW!! Given that it was completely unexpected, until I realised we were going to have enough free time to explore the adventures that can be had on the Island – this made it even more special to do it, while on the Island!
Thank you so much to SBH Qld for creating this amazing Program for us to become more empowered and informed in regards to our disabilities…and thank you for taking us to this idyllic location, so we can also choose to, if we wished, push ourselves to achieve some incredible adventures available on the Island (other SBH participants also went snorkelling, parasailing, quadbiking, up in the helicopter…I am so proud of my fellow SBH’ers for what they also achieved while over on the Island). And thank you to all Tangalooma Island staff for being so inclusive, and doing whatever you need to do, to make it happen for us, when we wish to do one of the activities on the Island. Amazing….
The continuation of these GOALS programs relies on funding – which is also one reason which I have decided to fundraise when I can for this amazing organisation who has given me SO much over the years. If you feel you would like to contribute to the amazing work which SBH Qld does, please feel free to donate through the Everyday Hero page I have set up for them, by clicking on the SBH Qld logo on the right hand side of this page..I thank you, the ‘SBH community of Qld thanks you, in advance, if you do choose to donate.
Stay tuned for a blog on my amazing experience of Snorkelling!
ANYTHING is Possible….when you have GOALS!