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12 February 2014

February

Hey Everyone !!

Hope you are all good and you haven't come down with a cold. The weather is awful here and i really have decided that i am moving to a hot country when I'm older :)

It's official, the K2B training has all started and everyone is really determined this year to improve on their time. Let's hope the weather is better than last year, it was horrendous and i remember being wrapped in a tin foil blanket as i was walking over kirby moor, everyone was shivering. 
Some eager people started training after we got back from Kilimanjaro, back in October. I wish i could do that again, even though it was the hardest thing i have ever done, i did manage to enjoy it. Except summit day :)) but it still felt amazing that I'd ticked off such a huge thing.

There are lots of things that i was never expected to do because of my syndrome.
Crouzon Syndrome is a genetic disorder characterised by the premature fusion of certain skull bones. This prevents the skull from growing normally and affects the shape of the head and face. Anyway, my parents were told that I would never be totally normal, that I would always look a little bit different and that I probably wouldn't achieve half the things that I have. I always looked different to my friends and everyone else. It didn't really affect me. I have had many surgeries in my life to help my eyes, face and skull. The life changing one was when i had the red frame surgery. It is basically a frame that is screwed to your face and they broke my bones and then stretched them a bit every day.


                                        It was red nose day, so we attached red ears to my frame :)


After i had it, it gave me a load of confidence, I'm not going to lie and it made me feel normal but over the years i have thought that it shouldn't matter how you look, or the way you talk, or the way you smile or if you are disabled. You can achieve anything if you put your mind to it and i know this because like i said, the doctors never thought i would be totally independent. I never let it bother me but it feels good to have summited Kilimanjaro and be the youngest EVER to be included in the Queen's Birthday Honours, who would have thought that when i was 3 years old.  Even now, after my surgeries, i know my face isn't perfect. The red frame made my nose go wonky and i know my eyes will always be a bit bigger and i notice it everyday, but i try to not let it bother me and just live my life to the fullest because you only live once. I guess what I'm trying to say (after all this mumbling) is don't let anything stand in your way of living your life the way you want to and never give up on yourself. 

Anyway school is really hard at the moment and the work is so difficult because we have our exams coming up, more and more pressure is building up. I'm looking forward to easter because i think we are looking at going away some where hot (TANNNNN) for a short break!!  i am also really excited for summer because i am going to look for some work experience and hopefully august will be hot like last summer. I love (hot) summers because you can just chill with your friends and family and have BBQs. I love going down to windermere and going swimming or sailing with my friends. As much as i love snuggling in front of a fire with hot chocolate, i am definitely a summer girl (i would wear shorts all year round if i could hah). 

I know this blog has been quite a serious and probably boring one but i just really wanted to share my thoughts with you about having a disorder. I hope you all have a great Valentines Day and a pleasant month :) 

Milly x