Not My Normal Style of Blog
However.....
When a good friend of mine went public with this I realised how little I know about the condition or it's effects on the person or their family.
Most of us are so wrapped up in our perfect or not so perfect lives that we don't see the struggle that others are going through? But behind their smile is a struggle and pain but a love that shines so bright leaving us all unaware of the fight they have day in day out 24/7.
My friend wrote this and I feel that I have to take time out and share this with you
From Wayne and Sarah Turner
I’ve spent most of my life avoiding help. I now realise that’s more stupidity than pride. But now I do need help. And no, this is not a copy & share chain post.
As most of you will know, 2 of my 3 children have special needs. These include OCD, ADHD and Tourette Syndrome. People often joke about these (invisible) conditions – I know I do – but do people actually understand how difficult these conditions are to cope with?
My 2 have to handle their conditions every minute of every hour of every day. It is debilitating to the point they will likely never live a ‘normal’ healthy life like most of us will. Their days range from intense anxiety as they wake, to (for Sophie) a day full of rituals she must undertake otherwise her feelings become dark. Yes dark! For the whole part, I love that you perhaps only see Sophie when she’s smiling or singing – boy she lives to sing. But like she said to us a few years ago “... but I’m always crying inside”.
Yes, it can be tough at times for me & Sarah as parents but it never ever leaves the kids. They’re the ones who really do suffer.
Today, I heard more sad news. That the Tourettes Association of NZ is struggling to stay active due to funding. There is a real possibility they may fold. This may not mean much to many, but I know the effect this will have on so many families in New Zealand. For example the TS Camp the kids attend every year or 2 will disappear as will the incredible support that is given to some really struggling parents – I’m worried as I’m often one of those parents. There’s one heck of a lady out there called Robyn Twemlow who with help from some other amazing parents props up the NZ community of TS families.
Check out the amazing work they do here http://www.tourettes.org.nz/
So here it is folks, who can spare the price of a cup of coffee each fortnight to help? If you could, that would fund (for example) 1 child going to the camp. How cool would that be?
:) We had to fight the Government for years to get some help but there’s only a limited pot to draw on. If you can offer a small amount of help, there’s a link on the TS website above.
"I want to build a fence at the top of the cliff, not park an ambulance at the bottom".
So there it is. I’m outside of my comfort zone and I’m asking for help. PM me if you want more info, and, if you run a business that could work well in partnership with the TANZ, even better
:)These kids are our future – yours and mine x
Feel free to like or share the heck out of this. The more that see it the better
:)
Thank you Wayne for the slight ever so slight insight. I too would like to see
"a fence at the top of the cliff, not an ambulance at the bottom".
Please visit their page here TOURETTES SYNDROME
