The Pain Behind The Smile…..I Love You Mum xxx

I love you mum. ….for the love you give and the hope that you have always shown
You are my inspiration,  my shinning star on the darkest night xxx

You may wonder why I haven’t spoken about my beautiful mum before now,  I guess it was because I didn’t know how.
Mum is perfect,  she is beautiful,  mum always said that Lisa and I were, and still are ‘The Wind Beneath Her Wings’. Mum often sang this song to us,  she even whispered it to me on my wedding day. Her grip was so tight,  I could feel her shaking,  not wanting to let her baby girl go.

You see mum and my sister were all that I had growing up,  along with my beautiful nanny and grampy,  whom I shall tell you about later. …gosh they are amazing.

When my dad passed away,  it was always myself,  mum and Lisa.  We were like the ‘three musketeers” we were bonded so tightly,  us against the world.
When we were tiny tot’s,  every night as mum kissed us goodnight, she would sing ‘Mr Sandman’  as she walked away to help sooth us to sleep.  I can hear her beautiful voice now singing………
Mr sandman,  Mr sandman
Sprinkle magic in my eyes,
Mr sandman,  Mr sandman
Turn the darkness into to day
La la la , la la la
Turn the darkness into day
So that we can go and play
La la la, la la la
So that we can go and play.

Mum was perfection,  an angel in mortal form. ….and still is as beautiful and amazing to this day

So what held me back telling you about her?
My beautiful mum is ill, very ill. She has been house bound for eight years now. So even though she only lives a few houses away from me…..I can’t reach her to hold,  mum is unable to do the same. 
I remember,  she became very ill in her late 20s like me. So many years she has suffered,  so much pain that she hides behind her beautiful smile. 
No consultant could figure out,  what was going on, until I became ill. My disease is a mirror image of my mum’s characteristics,  but her spasms are no where near as violent as mine…..that’s not to say that her pain is any less.  Due to our clinical picture being so similar,  but rare. The neurologist thought it would be worth checking mum’s GAD levels.
Yes , you guessed it,  she is positive to. Her diagnosis is still inconclusive until she meets with my London team. My poor mum, left to suffer all these years with such brutal symptoms.  Once she has been stamped with the Stiff Person Syndrome “label”, I will fight with every part of my heart and soul for the treatment she desperately needs.
I have had to watch my mum’s life, disintegrate in front of my eyes.  Before I became ill,  I used to help care for her, but Stiff Person Syndrome has stolen that from me too. But do you want to know something?  Mum always has a smile,  no matter what,  she has unbelievable courage and strength.  Mum never moans….ever. she fights every single day.  When she feels me crumbling,  mum holds me together,  via text.  Oh how I wish I could cuddle her.

So if you were to ask me who my hero is,  without hesitation I could give you my answer……my mum was,  is , and forever will be my hero.

The pain behind the smile….I love you mum xxx