Where to begin.......

I've started this blog about a thousand times and each time it sounds totally naff!! Not witty or smart or just downright interesting like so many of the others I've read..................I hope this is not a sign of things to come............however having said that, I guess its you, the poor reader who'd suffer - oh dear, no pressure then.....................

I imagine that if you're reading this though, you must know me on some level so apologies for the stating of the obvious!! I'm Julie, partner to Craig and mum to the above mentioned Natered Norman (will mostly be referred to as Ryan throughout this though)!! For those of you who don't know what natered means I guess the best I can do - given that I CANNOT for the life of me find a true translation - is ill tempered. He's also fondly referred to as Moany Minnie and the Moanster. Are you noticing the trend here??? Shame, poor wee mannie doesn't really deserve those names..............all of the time!! He CAN moan wi the best of them though!!

Ryan will be 6 at the end of Feb. Our journey with him has been pretty long and very, very difficult at times. We've been down some scary roads, the worst of which was being told he had a degenerative condition and then the second scariest was probably being told he didn't. This is very hard to explain but we spent months putting him through various tests to find out which one, trying desperately to come to terms with the fact we were losing our special boy to then have the floor swiped out from under us and be told he didn't have a degenerative condition. We were beyond terrified - too scared to believe the news, too scared to accept someone had misread scans or 'imagined' seeing something that wasn't there. Imagine living with the diagnosis of terminal cancer to then be told, many months later, that it was a mistake?? That initial diagnosis still haunts us, but thankfully he doesn't seem to be regressing so thats a HUGELY positive sign!!

Fast forward to today, he attends a fantastic special needs school. Cannot communicate, sit unaided, stand or walk and is completely dependant in all areas of his care. However, he makes his mood quite clearly known!! Doesn't enjoy sitting on his own or having to wait his turn, loves 1-1 attention, hates physio, loves hydro and rebound therapy, like noisy things - however NOT things that play music!! He is our 'lazy boy' and lives by the saying 'why have a dog and bark yourself?'

He's a very big boy for his age, something that continues to confuse everyone involved with him from the medical profession. He also has 'abnormal looking' and 'very sparse' white matter in his brain which has them equally stumped. Repeatedly they tell us 'we know what his condition is' and EVERY SINGLE TIME he proves them wrong. He is our medical enigma!!!

I desperately hold out for the day someone will say 'he has..................'. Having faced the bleakest of futures, I need to know what he's up against!! Hard for many to understand, why continue to put him through these tests, why not just let him be...............but I can't - not just yet..............

There are many tests being carried out just now, many results being waited on but I'll leave them for another day........................