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

38 comments:

  1. Not boring at all. It's lovely to hear about you and what you have overcome, the amazing things you have done and hopefully will continue to do. xx

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    1. thank you, i did it because my mum mentioned how she couldn't find any information when i was born and how she had to really fight for things. I just want others to know that it's made me a stronger person and i know what is important in life

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  2. You are such an inspiration, Alice! Keep it up! Btw, your blog is not boring at all! xx

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    1. I'm Milly, my sister died last year and i write the blog now. We don't want to change how Alice left the top of it so it still has her words. Milly x

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  3. Beauty is in the eye of the beholder,, You alone determine beauty,, and "Adversity Builds Character" With you,,it shows in how mature you are for such a young age.
    With any child's disorder comes heart ache, glad you made it a positive experience.
    Would love to see my comment on "A year with out Alice,,, You seem to avoid my comments,, any reason why???
    Hope your exam,s go well,, you are very smart ,just like your parents,,very clever people,,, Peace out kid,,,

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    1. i don't avoid any comments but i don't always read them because i am usually rushing for school or work or something. i did read your other thing and i do still have your jewellery and alice's too but my mum has the necklace you sent alice. Milly x

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  4. Dear Milly! What a fantastic post on this blog. I think that it is important, what you are saying. You are such a beautiful girl.
    Sending me regards from Denmark

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  5. Such a brace girl - keep doing what you're doing - you go girl xx

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    1. lol i will, i'm planning my next adventure :) Milly x

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  6. Milly,

    You are a beautiful girl, both inside and out. Such a sweet, good heart! Thank you for sharing yourself with us.

    Love and hugs,
    Aly in SC, USA

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    1. I'm not :) but it is important to me to be happy with the way I am and to make the best of my life, Milly x

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  7. Lovely post.
    I appreciate you shared your honest thoughts and inspired me. Live life to the fullest, never let anything bring you down - thats my motto. :)


    Sarah
    Pretty Gloss ♥ beauty, makeup & a bit of life..
    bloglovin' | twitter | pinterest | facebook

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    1. i like your motto, it's good :) Milly x

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  8. You can achieve anything if you put your mind to it

    Hi, I am Ajith, from a very distant land, and I am glad to say that this blog and life of Alice inspired me a lot. Thank you very much.

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    1. thank you ajith, i'm glad you read still, Milly x

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  9. Milly, you are amazing. Thank you for being so honest and sharing your story. Alice is proud of you, I am sure.

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    1. thank you, i just wanted to maybe let someone who is new with crouzons realise that anything is possible. Milly x

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  10. WOW Milly, you've endured so much in your life and yet you still find the ability to smile and be so vibrant. I find you to be very inspirational and try harder to do more with what I have. Thank you :) and God bless you and your family.

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  11. Milly you're amazing! Thank you for sharing. xx

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  12. Really?? Wow. So proud of you for sharing. I'd never heard of this disorder. Besides your face, what else does it affect? You mention that doctors feared you'd not be able to do much...Please do another blog pot educating us even more about this condition. You're one super brave girl! The picture of you wearing the frame is amazing. For you to have the courage to face it with good humour...Wow, I'm impressed!

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  13. No reply needed,, just wanted to thank you from the bottom of my heart,, Your friend Samantha said it quite eloquently, the worst feeling is when you care about a person and they totally ignore you..
    I do not think any of us can explain truly, why we care so much about your well being,,but we do and always will.,,as always, May the Angels always watch over you.

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  14. What an inspiration you are, sweet girl ! You are going to go far - can't wait to see what you do next ! Alice is looking down on you, and so proud........ Love from Cleveland , OHIO, USA ! xx

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  15. I was so pleased to see an update from you! It brightened my day and gave me a smile. Fly high wee one. You're going places with your spirit, determination & dedication. Your posts like your sisters were/are never boring. They are usually quite informative. I look forward to seeing how you and your mum, dad and dogs are making out. Take care and I hope it warms up soon. It's freezing in Canada as well!

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  16. You are beautiful, never doubt that! I know I've said this before but both you and Alice are such inspirations (I think that word is thrown around too easily, so I only ever use it when it really counts). You have been though so much Milly, both physically and emotionally. Some people would crumble under it all, and understandably so, but you seem to let it propel you to achieve more than most people would in two lifetimes. And look at what Alice achieved too under the most dreadful and difficult of circumstances. Sometimes when I'm not sure what to do when a decision needs to be made I think to myself 'one life, live it'. I wonder where I learnt that phrase :)

    Your blog is anything but boring, I look for it every month. I hope you keep popping in to let us know what you're doing. Good luck with the school stuff, it's a really challenging time but I have every faith you will do brilliantly, and if the exams don't go as well as you'd like, then it's not the end of the world either. This is one thing in life we do get to do over. Good luck lovely. x

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  17. I don't think your blog is at all boring. I am a lot older than you and just found out I have a life altering disease. I think you are an inspiration.

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  18. You truly are an inspiration, just like Alice. Tell your parents that they did a great job raising two amazing girls :)

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  19. Not boring at all. As someone who has numerous disabilties such as Epilepsy, cerebral palsy and I'm now on the verge of going from partially deaf to profoundly deaf, I know exactly what its like having a disability. Keep holding your head high like you are right now sweetie. Alice was such an inspiration to us all, and you are too.

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  20. SO proud of you, Milly! Climbing Kili is something I could never have done! (I'm far too lazy) haha... And you're absolutely right about beauty - it shouldn't matter what you look like on the outside... Your heart is golden, love... that makes you one of the most beautiful in the world!

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  21. Stumbled upon your blog today and wanted to say that you're amazing.

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  22. Lovely Millie, you are very much your sister's sister and you should be very proud of yourself!

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  23. pretty nice blog, following :)

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  24. This wasn't boring at all! Hot summers with bonfires and cocoa are the best! I hope it's nice and toasty for you this year. :)

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  25. Can I just say what a relief to find someone who actually knows what theyre talking about on the internet. You definitely know how to bring an issue to light and make it important. More people need to read this and understand this side of the story. I cant believe youre not more popular because you definitely have the gift. obat kanker darah

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  26. I found this blog very inspiring! Not at all boring! You could wear shorts ALL YEAR if you moved to Texas in America. We rarely have cold weather. But you may just change your mind very quickly about hot summers because they are VERY HOT here!

    Keep believing in yourself and keep living your life to the fullest! Keep that smile on your face and remember to enjoy life.

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  27. it was never boring to read your blog it actually inspires me have been always never boring

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  28. No..no.. your blog is not boring. I have enjoyed it but i am so sad to hear about you but i got inspiration from you. Thanks Alice.


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