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!!

Sorry....

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