Monday, October 31, 2011

Where has my Miss Sunshine gone?

"i don't like today" said niamh first thing this morning.

grump, grump, grump

daddy d replied, "don't you like being happy? today is a happy day!"

grump, grump, grump

"niamh, do you know what makes me happy?"

grump, grump, grump

"when i walk in to a room and see you, your mummy and eilidh..."

i smile and say,

 "you can choose to be happy, niamh...
you can be Little Miss Sunshine today..."

grump, grump, grumpy...

or maybe not!


Sunday, October 30, 2011

for sweetpea and baby t

for sweetpea - my sister and my friend - and baby t...

we sat reading tonight; niamh curled up on my lap, both snuggled in a rug - "this will be our poem for sweetpea and baby t, niamh".  "i miss my godmummy, mummy..."

across the miles, we all miss you

"Go slow,
come soon,
eyes meet
on the moon.

Me here,
you far,
eyes meet
at a star."

carol ann duffy

Wednesday, October 26, 2011

Faces @ The Gallery

faces floating like balloons,
released from their day-to-day.
their ever changing expressions
for all to see and ponder
and wonder
what they are experiencing,
what they are feeling.
our eyes are gateways to our soul;
our faces portraits of our lives.
frown lines, laughter lines,
sun spots, freckles and scars
are part of who we are.
who are you today?
does your smile shine through
or do your eyes tell a thousand words?
what does your face say about you today?

Check out the other Faces today - what do they tell you about the person?

Sunday, October 23, 2011

Courage, Hope & Strength

If I has found this quote 18 months ago, it would have become my mantra for survival through the darkest days of my life.  When my life was turned upside down I continued to have hope; more specifically, I placed my hope in the people around me and then in complete strangers. I placed my hope in mankind and in return I was rewarded with strength.  Yes, I despaired but I hoped in equal, if not more, measures...

Saturday, October 22, 2011

Niamh the Comedienne xxx

"why was the pear rolling on the road?"
i don't know, why was the pear rolling on the road?
"because he didn't have any legs"
and niamh dissolves in to the cutest fit of giggles...
niamh's jokes are so, so cute!
this one will keep me smiling today...

Wednesday, October 19, 2011

Life is a game of chance


"it's sh*t! you've been dealt a f**king awful set of cards!"

it's true...

it's so f**king true...

but how can i win?

how can i win with the hand i have been dealt?

i haven't got a winning hand.

i have days when people would be none the wiser though; when my attitude is positive and i have a smile upon my face.

i have days when i dwell upon the hand that i have been given...

but life is a game of chance, no one knows what hand they will be dealt; fate can be cruel but it can also be beautiful too and perhaps, no matter the hand that we are playing, we have to play as if we are winning or we might just miss out on what life truly has to offer...

"it's sh*t! you've been dealt a f**king awful set of cards!"

yes!  i have, but - by golly! - i'm a good bluffer...

Monday, October 17, 2011

"Be who you are ..."

Cake a baking, friend a coming,
Children abundant:
Noise and giggles and laughter;
Trains and dolls and drawing;
Lunch guzzled and off they fly
To play and jump and leap.
Coffee and tea and cake
And the mummy's get to talk -
"I didn't ask you how you are the last time..."
And the tears fall.
I'm tired of crying - my tears never seem to go away -
But she was the first to ask in such a long time
(In the flesh, in the here and now).
I'm scared that my friends are getting bored, exhausted by my pain.
And then I remembered this;
She asked because she cares, because I matter to her and she doesn't mind my rants and tears and sometimes you just need to "be who you are and say what you feel" because you can't go on hiding forever...

Monday, October 10, 2011

Chez Bed

No night-time glow;
Gentle rain
Mini Bar -
X Factor -
Early bed. 
12 hours:
Content Sleep.
A Lie in!
(A what?)
No bedside light,
But otherwise
Time to return to
Real Life:
To noise and
My beloved Children.

Night away @ Chez Bed sponsored by the ever fabuous Alalucia to whom I am forever endebted xxx

Here's to the Crazy Ones...

Saturday, October 08, 2011

A is for ...

A man died this week:  he may have well revolutionised modern technology, but, first and foremost he was a friend to many, a father to four and a husband.  He was loved and he loved in return: those people now grieve for the man they knew intimately and have now lost.  A gaping hole will exist in their hearts but they have had the privilege of loving him, knowing him and learning from him.  His personal life was private - and I find this extremely admirable - and it was obvious that he cherished his family.
He had so much to give; he was passionate and inspirational in all that he did, and yes, he may well be remembered for his contribution to the world of technology but I hope that he will be remembered for more.  He was a magnificent and inspirational orator and we could all do well listening to his wise words.  He lived each day as if it was his last and his impending death taught him the true value of life:

"No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share...Death is very likely the single best invention of Life. It is Life’s change agent."

I didn't know him;  I feel that I can not grieve or mourn for him, but I can be - and am - inspired by him, by his passion for life.   We could all do with a little of his passion, remembering to live our own lives and not the life of someone else.  For many his words will echo into eternity:

"There is no reason not to follow your heart."

Steve Jobs died peacefully, surrounded by his cherished family on October 5th 2011.

Friday, October 07, 2011

a little wish

my only wish for today - if i am allowed a wish - is that all the family i hold dear in my heart weren't a phone call away...

Thursday, October 06, 2011


I was recently reminded of a conversation from last years Muscular Dystrophy Campaign Scottish Conference and I went on to reread (and please follow the link...)  "August" where I talk about the very similar genetics of Spinal Muscular Atrophy (SMA) and Cystic Fibrosis (CF), the fact that these conditions are both common life-limiting, and the lack of awareness of SMA in comparison to CF. 

I hear you ask "but where do the donkeys fit in?".  Well, they demonstrate that the general public are good and kind and most definitely philanthropic, but that perhaps the public aren't really aware of the effect that neuromuscular conditions have on peoples life and the help that they can offer to these people?  (I must point out here that I have nothing against donkeys!)

There are over 200,000 charities in the UK and their plight, especially in times of recession, is never really far from our minds through media coverage, or perhaps through personal experience and real life.

Do you know that The Donkey Sanctuary raises approximately 20 million pounds in voluntary donations per year?  90% of their donations are spent worldwide on donkey welfare and they employ approximately 500 staff worldwide.

Do you know that the Muscular Dystrophy Campaign is funded almost entirely by voluntary donations?  They support nearly 70,000 babies, children and adults living in the UK with neuromuscular conditions.  The MDC employs approximately 100 employees and has over a 1000 volunteers "fighting the fight".  But do you know that annually they receive 7 million pounds in voluntary contributions?

Now donkeys are cute (kind of!) but is our charitable giving misguided?  Are we unaware of other charities who need our support?  Can our fundraising be more directed towards charities who are more in need? (Not that I'm saying that donkeys aren't a worthwhile cause, you understand.)  Perhaps I am too close to this, but having had £150,000 granted (by the MDC!) to research into SMA at Edinburgh University, I am acutely aware of the need to fundraise for this worthwhile cause!

cute or what?
move over donkey - eilidh is on her way!

Wednesday, October 05, 2011

The Gallery: What Colour is Today?

Today is a grey day - the sky is grey, grey, grey.
"Grey Day... Everything is grey.  I watch.  But nothing moves today"
And I dream of a bright blue days and pink days
"But when my days are Happy Pink
it's great to jump and just not think."

There are so many colours in this world and I love talking with the girls about colour and drawing and painting, mixing colours carelessly (and always - of course! - ending up with a sludgy brown...). 

Colours can be easy to describe - unlike moods.  Sometimes we can't find the words to describe how we are feeling and we stomp our feet or run around in a tizz or shout and scream; people look at us as if we are mad! 

I want my girls to be able to describe how they are feeling; and in light of our world being turned upside down, this has become so important to us.  We talk of colour and mood.  We talk of pink days and red days and how wonderful they are.  We talk of grey days and black days and how horrible they feel, but that it's ok to feel that way because soon the day will turn orange or yellow and we'll be happy again...

Dr Suess wrote the text to "My Many Coloured Days" in 1973; he wanted a "great colour artist... (to) bring a new pattern of thinking to my words" and this book was completed after his death.  It's a remarkable book and I highly recommend it to those who want to talk about feelings with their children - it's easy to read and the art is so expressive, catching the mood in colour and movement.

This post is part of Tara's The Gallery over at Sticky Fingers.  The theme this week is "Colour" ... I struggled with this post - colour is everywhere but it is Children's Book Week - and I love Children's Books - so this post fits just right...

So...What colour is your day today?

Tuesday, October 04, 2011

Can you juggle?

I seem to be juggling at the moment - or spinning plates as Dr Knickerboker might say!  There are too many balls up in the air and they are ready to fall to the ground at a moment's notice, with only me to keep them up.  I don't like this lack of control and the uneasiness that it brings; there is a sense of panic and impending failure...  The little voice inside quietly but clearly is stuck on repeat: "I can't do this.  I can't do this.  I can't so this."  At the moment I can calm her and bring some peace to her fretful life; for I am stronger than her.  I can only hope for control, for the juggling to become like second nature, for our home life to settle and for my confidence to grown at work.  It's too soon to let the balls fall colourfully and spectacularly to the ground...  I remind myself that this work-life balance is for me and for my family.  I am proud of myself and I am immensely proud of what we are achieving as a family with love as our foundation;  I just need to remind myself, on repeat, over and over and over again...

Sunday, October 02, 2011


We RAWR a lot in our house;
we have done since N started RAWRing at about 6 months of age.


JSGD at Etsy