Welcome!

I hope that you enjoy following our journey of life with Smith-Magenis Syndrome.
I hope that we will inspire you, entertain you and at times move you to tears....
I hope you learn that it is not only our daughter who is truly inspirational through her determination and infectious personality despite the difficulties she has, but that our sons are also immensley inspiring through the love, affection, fierce protection and patience they show for their sister through the good, the bad and the downright ugly days...

Welcome!

Wednesday 19 January 2011

My first blog!

Well I am a bit late in starting our family blog, for years a thought it was too intrusive, possibly slightly egocentric thinking people would even be interested in reading anything about us. But recently I realised that it is about creating awareness and providing support and hope for others, as well as off loading on the bad days and singing from the roof tops on the good days.
I realised that by sharing abit about us, it may help someone who is going through similar to feel they are not alone or showing someone who is having a rough few weeks or months, that there is light at the end of the tunnel and also very importantly it may provide enough insight and awareness that people who may have previously judged or misunderstood us, our daughter or any other child and their family member, may start to show more consideration, acceptance and compassion in the future.

Now to describe our family....

I have three wonderful boys - Michael (17), Andrew (15) and Ben (13), they are so very different to each other;

 Michael is quite serious, quiet, very hardworking and determined - his consideration and compassion isn't always transparant, but when needed it shines through so brightly it could dazzle you. Michael is such an inspiration - he is severely dyslexic - left primary school with the reading and spelling age of a 5 year old, but after several years of fighting the LEA managed to get into a specialist school in year 8 at the age of 13.Through excellent teaching and sheer determination and hardwork Michael left school in year 11 aged 16years old with 9 GCSE's D grade and above!! Michael is now working for a well known, luxury hotel chain where he is achieving his dream to become a chef after passing his further education college course. He plans to travel the world through transferring to different countries through his work- i'm sure he will achieve this!
 
Andrew - more talkative than Michael, but sits back and observes those around him before offering very insightful thoughts and opinions, he worries about other people's feelings and can often read people's emotions so very well - even when you think you are hiding them perfectly!  His patience and compassion is never ending with younger children and it is easy to see why he wants to become a special needs teacher when he leaves school - he is a natural. Andrew like Michael has struggled significantly with severe dyslexia - yet just like Michael is adamant he will achieve what he needs to reach his career dream.  He enjoys playing the trumpet and has developed a love for science fiction and fantasy novels.

Ben - well...he is the active and overly chatty son! With a passion for acting, animals ( particularly cats) and chatting - Ben is never backwards in coming forward! He is a bundle of energy, always making quirky comments or jokes, laughing and bouncing around the house! He cares deeply for his cats and has shown such a responsible and mature attitude towards the care of his animals he has surprised us! Ben aspires to be a actor and should he not acomplish this, he wants to go into graphic design - he could easily achieve any of these as he is equally skilled at both!

Whilst all three are very different, there share a common passion - the fierce protection, love and support they have and show for their little sister. They feel her pain and hurt when people stare at her, feel anger when comments are passed, feel the pride and happiness when they share or observe her accomplishments and share the pain when she is hurt, sad or upset. They spend hours encouraging her, motivating her and pushing her to help her develop to her full potential.

  They are her knights in not so shiny armour!!!

That leads us to the little lady herself -
Well!! She loves everything pink (and purple)! Loves her music, her computer, cbeebies and Nick Jnr. She always wants to dance and sing, loves cuddles, kisses and loves the world!! She loves books and is learning to read at the moment! Music is her main passion.... especially Justin Bieber,Cheryl Cole, JLS, Cat Stevens ( Yes I said Cat Stevens!!), X factor and Peter Andre amongst others.
Grace loves everything, everyone and life in general. She has the most beautiful smile, eyes, soul and personality.

So now I have finished our rather rambled introduction - I hope you  enjoyed it and will pop back again soon!

Lisa - A very proud Mum!

1 comment:

  1. you are all so amazing i cannot say how excited i am to discover you are writing a blog! you know how inspirational you were to team george when we first discovered tilly had sms, you were a light at the end of a seemingly never ending dark tunnel. i am utterly certain that this will help many more people. we love you all xxxx

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