Sunday, 6 April 2008

Snowflakes - a lonely office - Homage & Thanks

Its just turned April. The clocks have moved an hour forward. The urban birds are back, singing the South London neighborhoods awake on mild mornings and it’s snowing! Not just snowing, but chunking it down! I have just lost an hour standing at my deserted office, reception post, doing my Sunday security job, with my face pressed up against the large windows under a noisy heater, grinning, like a kid longing to get out and dive into the inevitable snowball wars with the neighbors kids. Mind you it doesn’t seem to be settling. The huge flakes are windlessly, wandering down from the sky and dissolving on impact leaving nothing but wet, with no white. Standing there has set my mind wandering. I cant help feeling amazed at how people cope with their lives when they have disabled children that become disabled adults. The hardships they deal with 24hours a day. The optimism they think, feel and show i only hope rubs off to the rest of us out there leading the usual life. My sister Susan has said to me with a reassuring smile "this is my life now". Out of that brutal realization comes the iron built optimism i mention. As well as undefeatable strength. That in itself has inspired me to ride into the magic and mayhem that the road from prudhoe to ushuaia will be. Where does that courage come from? When parents, like Susan and Ian, my brother in law, notice that their own kids will never be the same as the kids, having snowball wars, dancing around in the school playground or down the high street with their mates chatting and laughing as young kids do, in that regular, unsolitary daily existence. “this is my life now”, WOW ! Unbelievable! I want that level of spirit! . Thank the universe also for those single-minded researchers and society workers, who strive for knowledge and results to aid the families affected with syndromes such as Fragile X. I recently read an article, which Magdalena kindly sent me, saying that researchers funded by FRAXA have discovered that a drug used to treat afflictions, such as acne and lyme disease, might be able to reduce anxiety & behavioral problems in people with fragile X. Tests start this spring. Fingers crossed on that then ! For in-depth understanding visit the site and click on research.

Publicity has been growing for the FXPedition of late. Nite Watches, who run an anything is possible initiative, have taken me on board, with great interest. They have been doing publicity for me, which lead to a Television interview on Nuts TV. A great confidence boosting experience for me on a personal level , which I enjoyed after being apprehensively scared stiff , but followed it through for the cause, which can only help the spread of awareness of Fragile X. Nite watches have created a range of essential out door activity watches, which are proven to be robust and unique at a very reasonable price. If you are involved with the great outdoors, or even just clumsy with a habit of smashing watches, I strongly recommend a look at their range and a read of the interesting gaseous inventions of their watch mechanics. Dave Gurman, the editor of Riders Digest kindly wrote a fantastic article on the FXPedition, getting right to the point in an honest, real way, which isn’t surprising really to anyone who knows the riders digest. I have to be honest and say that Dave’s magazine, which is free by the way, gets to the heart of matters bikes and beyond in ways the glossy pay for mags just cant find. A unique, earthy read ! a pleasure & an education ! I must mention also, after loads of research and past experiences I was having trouble finding the right kit, as in bike clothing for the trip, to get. In the end I found Hideout leathers, out there in darkest Essex. Thinking that normally sellers just want a sale and I wont get any help really I only went along because they seemed to have a wide selection of race and touring gear. I was wonderfully surprised to find Kate & Sandra working in what seemed like a small farmyard barn, stacked out with all the right stuff and willing to get stuck in with all the help and advice I needed, comparing all different styles for all climates & even making a phone call to a Dakar racing acquaintance for advice for me, which lead to me finding what looks like the right choice of gear ! . I want to Thank Magdalena “Maggie” Mayo also , for helping me loads, in making contact with People in Latin America, her input to the Blog and also giving me the kick in the rear that I needed to get a bit more organised ! .. Donations have been slowing up recently, but with all the publicity bubbling up the awareness importantly is getting out there! Thank you again and again to everyone who has donated so far. Remember if you are considering donating, bare in mind please that your donation IS going straight to the Fragile X Society and not slipping into my wallet.


Nancy said...

I just saw you on the You Tube video and came directly to your site. We have a 20-year-old son with Fragile X and we appreciate all of your efforts toward Alex and all of the kids and families affected by this disorder.

May God bless you abundantly and keep you safe in this endeavor. I will be praying for you. Just know that all of our kids are riding with you.

God's speed,
Alex' mom

siggsi said...

thank you nancy. I really appreciate your warm comments ! im sure i will think on your words when the going gets tough !

simon x

pete said...

I now see the driving force behind your motivation.