Saturday, December 31, 2011

For Auld Lang Syne, My Dear


To celebrate the ne'er here in Scotland  - and around the world  - we sing a song, to say goodbye to the old and bring in the new, to celebrate friends past and present and rejoice in those we love.

Auld Lang Syne asks rhetorically if, with friendships and loved ones specifically in mind, we should allow ourselves to  forgot the old times and all that has gone before?   I know that we shouldn't, for it is our past and the people from those days that have made us who we are today: each person contributing in some way to our lives, each one teaching us something about the world and about ourselves, too.

So tonight I will be remembering loved ones and friends, past and present, and the good and not-so-good times that we have shared, thanking them for all that they have done for me, and celebrating all that they mean to me.

To old friends and new, to loved ones true and dear, here's to the ne'er of twenty-twelve: may it bring you much love, joy, laughter and happiness.





"Should old acquaintance be forgot,
and never brought to mind?
Should old acquaintance be forgot,
and old lang syne?

For auld lang syne, my dear,
for auld lang syne,
we'll take a cup of kindness yet,
for auld lang syne.

And surely you’ll buy your pint cup!
and surely I’ll buy mine!
And we'll take a cup o’ kindness yet,
for auld lang syne.

We two have run about the slopes,
and picked the daisies fine;
But we’ve wandered many a weary foot,
since auld lang syne.

We two have paddled in the stream,
from morning sun till dine;
But seas between us broad have roared
since auld lang syne.

And there’s a hand my trusty friend!
And give us a hand o’ thine!
And we’ll take a right good-will draught,
for auld lang syne.
For auld lang syne, my dear,
for auld lang syne,
we'll take a cup of kindness yet,
for auld lang syne."




Friday, December 30, 2011

The Things You Wish Yourself

As the days get slowly longer, as we see the first hint of Spring around the corner, as we look forwards to the fast approaching new year, I wish you all the things you wish for yourself...


xxx













The Things You Wish Yourself


As the snow falls gently down, gently down, gently down
Filling up the city streets, gently down, gently down, gently down,

May the season bring you joy
And find you in good health
But most of all we wish you all
The things you wish yourself.

As the season draws to an end, to an end, to an end
May you share it with a friend, with a friend, with a friend

May the season bring you joy
And find you in good health
But most of all we wish you all
The things you wish yourself.

The things you wish yourself
May be a better year
A wish for peace throughout the world
More laughter and less tears.

The things you wish yourself
And those you hold most dear
So raise a glass to times gone past
And welcome the New Year.

As the snow falls gently down, gently down, gently down
Filling up the city streets, gently down, gently down, gently down,

May the season bring you joy
And find you in good health
But most of all we wish you all
The things you wish yourself.

But most of all we wish you all
The things you wish yourself.


Ralph McTell

Thursday, December 29, 2011

I choose Joy - most times...


There were three in a bed





There were three in the bed
and the mummy said
"That's it! That's it!"
So she grabbed her pillow
and got right out...







Apart from our little trip away, I can't quite remember when I had a good night's sleep.  Sleep hasn't been the easiest thing to come by but it has alluded us even more in recent months.

When babies come along you know that you are going to be sleep deprived: you make a conscious decision to start a family and you prepare yourself mentally for a time of little sleep.  Then, when your baby sleeps through for the first time, you celebrate and do a little dance and think "ah, bliss, sleeps returns to nourish me..."  You are lulled into a false state of security, for then comes the first tooth, the first cold, the first night terror, the first wet bed, and you realise that this is parenthood and sleep a past acquaintance.

I had come to terms with the fact that there would be good nights of sleep interrupted by a few sleepless nights, but a catalogue of events have brought me to here, sitting at my computer, tapping away at 0300, seeking peace and solitude.

Eilidh, as you are fully aware has SMA, a condition which results in weak muscles and her inability to walk: it also means that she can't roll or move around in bed and so she gets uncomfortable and  wakes up and calls for "mummy" or "daddy", needing moved and turned and repositioned.  Sometimes she slumbers on, other times she needs a cuddle or a song to fall back to sleep.  From the time she goes to bed to the time she wakes - 7pm to 7am (if we are lucky!) - this might happen anywhere up to eight times.  It may only take a few minutes; it may take an hour or so - it all adds up to sleep interrupted though...

Eilidh shares a room with Niamh.  A few months ago Niamh came to me after a particularly wakeful night and said " mummy, i know that you are tired - I'm can turn Eilidh for you".  I looked at her, my heart breaking open a little, and took her into my arms, "you don't need to do that, Niamh, but thank you.  thank you so much. you are her big sister and I'm her mummy: you play with her and cuddle her and laugh with her, and I will look after her.  I will look after you both.  I promise..."  I realised then how much of an impact Eilidh's restlessness was having on Niamh - when Eilidh wakes, Niamh rouses a little and sometimes will wake fully too.  No wonder she looks so tired...

Since I have gone back to work, in combination with a poor sleep pattern, Niamh has crawled, quietly like a ninja, into bed with us during the wee small hours of the morning. I think that she is missing me during the day and needs to be near me during the night; on top of me, kicking, wriggling, star-fishing and duvet-huggingly near me!  Or perhaps she's just trying to get some sleep away from her sister and she is being clever in telling me that it's because she is missing me- who knows!  Invariably D will climb out of bed and go through to Eilidh's room to sleep and turn her, allowing us all to get a bit more sleep. 

This has been the pattern for the last five months and tonight, combined with D's snoring, I've had enough!  There is no easy fix, however.  No instant sleep remedy to be had.  We need to extend our house, build another bedroom, give Niamh her own room, regain our "marital bed"... Then there's Eilidh: a new mattress; a tilting bed; and, in time, perhaps ventilation, too - and yet none of this can guarantee us a night of sleep...

So, until we can build our extension - and planning is in - we will continue to do whatever it takes for us all to sleep a decent sleep.  Eilidh will get turned, Niamh will share our bed, D will climb into Niamh's bed, I will have early night's, and we will manage because we have to.  This is life with SMA (and a small house!) and we'll take each day as it comes...  I might, however, need to find a baby-sitter and a hotel room soon; sleep, we will be reunited...

And now, I will bid you goodnight; sleep well, my friend, sleep well.


Monday, December 26, 2011

The 7 Santas of Christmas Day




This Christmas I cooked for seven hungry mouths, each one grateful for the company of their family, each one thankful for the food that was placed in front of them.

For the first time in forty-four years, my amazing mother-in-law had her Christmas meal cooked for her: I think (and hope!) that we all took pleasure from her enjoyment of the occasion for she truly deserves to be cared for and waited on.  I didn't even make her wash the dishes...

As we sat down to eat and pull crackers and race Santas, I was again reminded of the importance of family - family is everything.  Each and every day, no matter the occasion, whether it be an ordinary day or Christmas Day, family is everything.  Yesterday was no exception; I was so very blessed to be sharing my day with my beautiful family.









“What is Christmas?  It is tenderness for the past, courage for the present, hope for the future.  It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace.”

Agnes M. Pharo

Friday, December 23, 2011

What will you be giving this Christmas?





Have you really thought about each gift you are about to give?  For Christmas is so much more than the presents under the tree or the food that you will eat:  for me Christmas is about the people that I will share my gifts with, the people that will be around the tree, the people that I love...













and to my family
my undying love and devotion
xxx






Wednesday, December 21, 2011

Miss Mistletoe Fairy












She's beautiful, isn't she?  And she adorns my tree, perfectly and gracefully.  I treated myself to her this year and I am so very glad that I did because she makes me smile everytime I look at her and the girls adore her.  She fittingly represents the choir of angels who sang on high to announce the birth of Jesus and I hope that she graces my family and our christmas tree for many years to come.

Halinka is a talented lady and makes the most exquisite fairies and ornaments!  Please do take the time to have a look, you won't be disappointed... 















While going to get the link for this post I notice that she has recently added nativity ornaments too - I might just put them on my wish list for next Christmas...

Friday, December 16, 2011

The Nativity









I stood in a full nursery room today beside mummys and daddys, grannys and granpas, watching our little ones perform their nursery nativity "The Little Angel".  They sang with great gusto and confidence, and danced as if no one was watching: I was so proud of each and every one of them - able or disabled, child or teacher - for they had put on a truly magical performance.


"There's something special going on, special going on and I don't know what it is.  It might be happy, it won't be sad.  I'm sure that it will make me glad.  There's something special going on, special going on and I don't know what it is"


Christmas is a special time but The Little Angel wonders what makes Christmas so special.  It's not the snowflakes twirling, whirling to the ground, it's not the little Christmas puddings and the scrumptious food that we eat; it's not Santa Claus and his beard of white nor the presents under the tree: these are all indeed enjoyable and fun and very much part of a happy Christmas, but it's only when The Little Angel arrives at Bethlehem and finds the scene at the manger that she realises what makes the night so very special. 

Christmas is about the birth of Jesus and I was reminded of this today.  It's a powerful lesson for any child to learn and I'm glad that Niamh and Eilidh were able to take part in such a lovely nativity which told them of the intangible joy and excitement that Christmas brings but kept the story of the real Christmas and the birth of Jesus alive and special.

So thank you to each and every little girl and boy that took part in the nativity today and a big thank you to all the teachers who made it possible - it really was a joy to watch!





And Niamh, as for your question "mummy, why isn't Joseph Jesus' daddy?": go and ask your daddy...

Wednesday, December 14, 2011

A Little Star




A bright light appeared in the sky last month; a little star, new and twinkling brightly.  She twinkles through the dark, turbulent air and the difficult miles to shine upon her mummy and daddy, trying to reassure them that she is happy and at peace: but their tears still fall for they have lost their precious, beautiful daughter forever.

My heart goes out to them and they are in my thoughts and prayers: I cannot begin to imagine the pain that they are experiencing; I cannot imagine losing a child and I cannot begin to imagine losing Eilidh to SMA.  But that is what has happened to this mummy and daddy; their star Estella was eight months old when she lost her fight with SMA 1 - they knew that she had "no tomorrow and no forever", but they loved her every moment she breathed and now she shines upon them, guiding them through the darkness until the end of time.

God Bless, Estella.
Sleep tight, sweet baby.
xxx








"Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy."
Eskimo Proverb




 

This post, written in December 2011 was never published but saved as a draft until now, July 2012.






Little Fingers





A Christmas Card for Eilidh arrived the other day.  I watched her as she grabbed it and looked at it and even bit the corner of the envelope: and then I realised that her little fingers were too weak to open it.  Although she can sit up and feed herself chocolate and cake and hug her baby tight, she can't rip paper (or open a bag of chocolate buttons!).

So this Christmas, we'll be wrapping in tissue paper - she can definitely tear that apart quickly!  We'll have to ask others to do the same too; we can't deprive of her the joy of opening her presents...











Sometimes you experience a moment - and this was one such moment - that puts Eilidh's SMA into context... "oh, that's how weak she is..."

Tuesday, December 13, 2011

Booger Alert!

Day 2 in Sneezeville: the boogers are out!













Mucus, Snot, Boogers and Phlegm!

aaaatishooooo!
aaaatishoooooooo!
aaaatishoooooooooo!

Karvol, Beechams and Calpol a plenty.
Running noses, streaming eyes and coughs galore...

aaaatishooooo!
aaaatishoooooooo!
aaaatishoooooooooo!








and for those not in the "know".... the definition of  booger  - slang  - a piece of dried mucus in or from the nose.

Tuesday, December 06, 2011

A Blanket of Love

Each stitch was knitted with love to keep a little baby warm until we can hold them tight in our arms and bless them with our love. 


 This was my knitting project for tiny t...















Special thanks to peter rabbit for modelling xxx

And thanks to Purl Bee for the wonderful pattern and Loop for the beautiful wool - I would highly recommend these sites to all knitters extraordinaire.




Monday, December 05, 2011

Superwoman?



I am very much in need of some positive affirmation today.

Some days, I know that I am doing a wonderful job: some days I think very differently and I don't believe it to be true at all.

Today is one of the latter; if I am wholly truthful, the last week or so has been a struggle...

I remind myself that I am not alone, that friends and family, far and wide are living with their day to day - whatever that may be - and that life does carry on.  It might be a rollercoaster, but it's life as we know it. 

So here's to me, and here's to you...

we are truly amazing!

But we need to remember this:
We need to be true to ourselves. 
We need to believe in ourselves.
And it's ok to have a "down" day, too... 








"Everywhere I'm turning
Nothing seems complete
I stand up and I'm searching
For the better part of me

I hang my head from sorrow
Slave to humanity
I wear it on my shoulders
Gotta find the strength in me

'Cause I am a Superwoman
Yes I am

Still when I'm a mess,
I still put on a vest
With an S on my chest
Oh yes, I'm a Superwoman

For all the mothers fighting
For better days to come
And all my women
All my women sitting here trying
To come home before the sun

And all my sisters coming together
Say yes I will, yes I can

'Cause I am a Superwoman
Yes I am

Still when I'm a mess
I still put on a vest
With an S on my chest
Oh yes, I'm a Superwoman

When I'm breaking down and I can't be found
And I start to get weak
'Cause no one knows me
Underneath these clothes
But I can fly, we can fly, oh

'Cause I am a Superwoman
Yes I am
Even when I'm a mess
I still put on a vest
With an S on my chest
Oh yes, I'm a Superwoman

Let me tell you, I am a Superwoman
Yes I am, oh yeah
See, even when I'm a mess
I still put on a vest
With an S on my chest
Oh yes, I'm a Superwoman
Said I'm a Superwoman"




Tuesday, November 29, 2011

Caught Unaware





It's a Sunday night; it's been a long but happy day.  We slump on the sofa with a cuppa and a biccie and look to the tv to switch off and relax.  X-Factor - one of my guilty pleasures - comes on and

Wham!


I'm caught unaware.  The break in my heart opens to show me my pain and the tears fall; the sadness is overwhelming.  In an instant I am reminded how precious life is.  I am forced to remember that my child has a potentially life shortening illness.  I am reminded that she will become weaker and need lifted and dressed and bathed and cared for.  I am reminded how much I am hurting: Oh, my God, I am hurting...


You think that you are taking each day as it comes, that you are doing "just fine", but then the reality hits and it hits hard.  I am managing.  I am putting a very brave face on, but sometimes I am caught unaware...

There are approximately 23,500 children and young adults living in the UK who are unlikely to reach adulthood - I know, therefore, that I am not alone; there are many mummys out there who care for their children just as I care for Eilidh, each one of us hoping and wishing and praying that our child's life isn't too short, that we can have many precious days together.  There are too many stars in the sky to count, but there are many wishes to be made: Eilidh's star shines bright.


 










Please take the time to read another post over at Whizzy Wheels which talks of the importance of "Together for Short Lives" and the other charities which will benefit from the proceeds of the sale of this single.  Thank you x

Monday, November 28, 2011

"You fill up my senses", sweet baby

This one's for Sweetpea
xxx








The first moment I was alone with Niamh, I held her close and I played her this song...

She captivated me completely.  She drew me into her soul, teaching me of unconditional love and the joy of motherhoodShe filled my senses and I saw the world afresh and new.

John Denver is my guilty pleasure... Niamh was born into a John Denver crazy family; this is one of the first of his songs that I remember from my childhood and there, in the maternity ward, I wanted to share it with her.   

She has since danced to John with her grannie and her mummy singing off key, loud and proud.   She loves "Grandma's Feather Bed" and bounces on beds like she's never bounced before.   These moments, just like the first one I shared with her nearly five years ago, make my heart soar.

So here's to the soon to be new member of the John Denver Fan Club: you don't know it yet but your mummy loves John Denver...






"I'll walk in the rain by your side,
I'll cling to the warmth in your hand,
I'll do anything to keep you satisfied.
I love you more than anybody can."

Sunday, November 27, 2011

"Fold your wings round them"


There are times when my children are sleeping, peacefully and soundly, that I ask for God to hold them tight, to protect them and guide them through life.  Today I pray that He looks after all of the children I already know and love, and those who I have yet to meet...






O Angels of God, from heaven so bright,
watching beside my children to lead them aright;
Fold your wings round them, and guard them with love;
Softly sing songs to them of heaven above.

Amen

Saturday, November 12, 2011

Volcanoes and Glaciers





“Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did do. So throw off the bowlines, sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.”
Mark Twain






Tomorrow D and I set out on an adventure, just the two of us.  David turns 40 next week and this is his birthday present from me to him.  We are so in need of time together, alone, far from our day-to-day responsibilities and the demands of family life.  We need time together to rekindle our friendship and the love that binds us.  It feels that we have been so busy focusing on the girls and family life that we have forgotten that there was an "us".  The "us" is central to family life and we know that if we are strong then we can support each other whatever should happen in our day-to-dayWe, like every couple, need to work on the strong bond that already exists between us and never take each other for granted.  This time is for us... 





"We live in a wonderful world that is full of beauty, charm and adventure. There is no end to the adventures we can have if only we seek them with our eyes open."
Jawaharal Nehru

Friday, November 11, 2011

In the Silence




"All we have of freedom, all we use or know -
This our fathers bought for us long and long ago."

Rudyard Kipling









pause in the silence today.  let yourself be drawn into it, and perhaps, amidst the calm, you will find some sense of peace;  with yourself, with those you love, with those you have lost, with God.  take a moment to take stock, to remember, to grieve: when the silence ends, rejoin the every day, full of life and the living, and give everything to those still present because life continues on.




Thursday, November 10, 2011

Knit one, Purl one

















i have lost myself in the rhythmical and monotonous beauty of knitting.
i pick up my needles and knit, losing myself for hours, focusing only on each stitch, forgetting the day-to-day, pouring my love into each knit and purl.  
these stitches will soon sit gently and warmly against soft skin, bringing heartfelt warmth and love to the recipients.
i knit on; the end is in sight, but what then? 
what little project calls out to me then?

Tuesday, November 01, 2011

"it's a new dawn"










it hit me one night a couple of weeks ago that i can no longer listen to my favourite song.  i was lying in bed, listening to a random selection of songs, trying to capture sleep.  gregory porter came on and silent tears fell; then and there i realised "feeling good" is no longer me.  "it's a new dawn, it's a new day, it's a new life" and all of the positivity these words embrace don't seem to apply to my day-to-day anymore.  the image of "butterflies all having fun" conjures up a carefree attitude - an attitude i embraced in years gone by which now feels unachievable... and as i fell into a gentle slumber that night, i so wished that i could "sleep in peace when the day is done"...  perhaps it just wasn't the right time to be listening to the song and yet through the years it has helped me over and over again to see the positive side of life and to enjoy the moment.  perhaps it's time to find a new song to guide me in my new life, inspiring my new normal; but until i find that song - whatever it may be! -  it's back to john denver i'm afraid...






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!







pinterest













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
xxx












"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
encapsulated,
frozen
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 -
Finally.
"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;
Darkness,
Gentle rain
Falling.
A
Quiet
House.
Mini Bar -
Free.
X Factor -
Priceless.
Early bed. 
12 hours:
Uninterrupted,
Peaceful,
Content Sleep.
A Lie in!
(A what?)
Breakfast
Cooked
To
Perfection.
Comments?
No bedside light,
But otherwise
Blissful.
Alas,
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

Donkeys!




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!