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...


Sunday, 10 April 2011

A quick update!!

I just wanted to quickly share an experience I had yesterday.
We were walking around the toy shop yesterday looking for a birthday present for a little girl who has the same syndrome as Grace. We were looking at the rows of toys - Pepper pig, Minnie Mouse, Handy Manny etc etc - Grace loved them all - pushing the buttons, watching the lights, listening to the music and sounds - all baby toys or toys for 3+ - so significantly younger than her almost 10 years of age - nothing new, not a concern -'appropriate age' for toys, development etc all went out the window years ago.

But then we passed an aisle with a poster of Justin Bieber and some of the Justin Bieber 'dolls' on the shelf, and she let out a squeal and suddenly she turned into a minature teenage groupie - " I love Justin Bieber!!" and she starts to sing "Baby, Baby". Memories of her at the Justin Bieber concert came flooding back, as she danced and sung throughout the entire show...
 In the short space of a few steps Grace we went from preschool toys to teenage groupie!! Oh the complexities of life with SMS!!

Thursday, 7 April 2011


I have been really rubbish updating this - sometimes life gets so hectic, the time flies by and you don't know where it went....

I thought I would share a poem that I wrote, it is based on a day that we went to see Grace at one of her dance show performances. She loves dance school so much, but it is a really bitter sweet experience. On one hand as time has moved on the gap between her ability and the others has become much more obvious, which is harder as she is already much older than the children in her group ( although size wise she fits beautifully!) but then on the other hand, since we were told she may never walk or talk, seeing her on a stage performing is that most amazing experience ever and one that we never thought we would see...

Anyway i'll stop rambling! Here is my poem...

I watch you dance and I watch you sing,
Your smile so bright, your eyes shining,
So full of joy and so full of life,
The world so pure, in your eyesight

You don’t hear the giggles from right at the back
As you’re one step slower,than the rest of the pack,
You smile and you wave, as you perfect each  move,
Slightly slower than the rest – but you’ve  nothing to prove.

Tears trickle slowly down my face
I turn my head in self disgrace
I sit and cry, mixed sorrow and joy
Soul both lifted and then destroyed

You dance around, you sing so loud,
Joy on your face, beam to the crowd,
You’re trying so hard, to keep in time
You’re doing so well, yet still trailing behind.

Mixed sorrow and joy,
Mixed pride and grief,
You’ve achieved so much,
But suffered defeat.

The guilt weighs heavy, heavy on my soul,
How dare I feel sorry, or seek console,
You’ve achieved so much, Not suffered defeat.
Never given up or hailed defeat

How dare I sit and mourn the loss,
Of something never had, so never lost,
You smile so broad, you laugh so loud
You’ve achieved so much and made me so proud.

I take a deep breathe, wipe the tears away, 
Let the aching subside,  the grief fade away,
Joy fills the space, the grief left behind,
When I locked it away, back deep inside.

I smile at my princess, as she bows to the crowd
I smile and I wave, so very, very proud
As the aching rumbles painfully  deep inside  
 I push it aside with the most immense pride.

I watch you dance and I watch you sing,
Your smile so bright, your eyes shining,
So full of joy and so full of life,
I wish I saw the world through  your eyesight

Friday, 21 January 2011

At last someone who listens!

The most difficult aspect of having a children with a rare and virtually 'unknown' syndrome is that very few professional know anything about it. You can see professional after professional and yet feel totally ignored and misunderstood. You try and tell them a concern you have, only to to be ignored as being neurotic or a 'wannabe Dr', when in reality you live and breathe every difficulty you children has, every symptom, every possible complication and then speak to others in the same position, research and then research some more - so in effect you know what is wrong or know how the problem could most probably be sorted yet - yet very often are not listened to and totally ignored. Or in the worst case scenario told you are exaggerating your child's illness to make them 'more disabled'. Why would anyone do that??

Well yesterday for the first time in years we met someone who not only knew about our daughter's disability, but actually listened to our daughter's problems, acknowledged  that our concerns were valid and offered appropriate and viable ways to try to address the difficulties.

We left the appointment as if a weight had been lifted off our shoulders, as if there was hope that certain aspects of her disability that caused pain or significant issues may be eased - the feeling was amazing!

On a different note - Grace started her sleep meds last night - she slept for a whole 6 hours without waking up! I think that must be a first!! 6 solid hours of sleep! Wow!! Only problem was that I was still awake and checking on her like a new born baby throughout the night - but old habits take a while break!

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!