June 27, 2011

The early years

I was born with a condition called Moebius Sydnrome. Apparantly it is a neurological disorder that affects certain cranial nerves and therefore sufferers can not frown or smile. However, it is known to present itself in a number of different ways, such as limb deficiency and other skeletal deformities. I am quite lucky in the fact that this syndrome didn't affect my facial movements, however i was born with limb deficincies. On my left side, i have a stump for an arm which ends just after the elbow and a stump for a leg on the same side which goes all the way down to where an ankle should be. On the right side i don't have any stumps but instead of hand i have 3 little (what they say in medical terms) nubbins and a tiny little thumb. On the right side i do actually have afoot but it is very small and stopped growing when i was around 9 years old, and i only have 4 toes. I was also born with strabismus (cross eyes) which was corrected with surgery early on. I also have a very small mouth and have a jaw deformity in that the lower half is not aligned with my top half so it causes my teeth to stick out a bit.

My childhood was all a bit of a blur. The thing that sticks out was that i was alway going to the hospital. I remember always been pulled out of school (primary) sometime during the day as i had an appointment or missing days of school because of my appointments. I had friends at primary school but because i was hardly ever there it was hard to keep up with what was going on and the reality of it was i was different from everyone else my age as they could do things i couldn't do. I still managed to have some fun though, having friends over, sleeping over at friends places. Academically i suffered as well, not just because i was cheeky and wouldn't do my homework but because my hospital life was the main part of my life back then.

If i look back on that time, the thing that still brings fear to me, is when i used to have operations. I was quite lucky that i didn't have to have too many as i was absolutely petrified of them. Most of them were for my mouth but i think they started happening pretty early. I was always petrified of the big black mask they used to have to put me to sleep and the smell coming from them. I remember refusing to talk when i had it on and when the anaesthetist would try and calm me down, at the time the only thing to calm me down was when my mum was by myside. As time went on and i had to have more operations i didn't become more resilient as you would think i guess you could say i was quite the opposite. The doctors would have a hard time getting me to sleep sometimes, i would try and stall them by saying they hadn't taken off my artificial leg or something. As much as i tried, in the end they had to literally hold me down to get me to sleep. Just thinking about them makes me shudder........

June 26, 2011

Hey

Well.....here i am writing a blog. People have been saying to me for years that i should get my story out there. I don't quite know where to start but basically i am creating this blog to share my story. I have had to deal with a lot of hardship in my life but i have worked so hard to overcome it each time coming out stronger.
 It hasn't been easy, every single day i have to fight for a good life but i know in the end life is worth it, even with all it's twists and turns.

So, I hope you will come on this journey with me to tell my story, Belinda's Story.