Thursday, September 29, 2011

Yummy...




You know it hasn't been too good a day when you get home,
walk into the kitchen and immediately reach for this...


pinterest










but it did make me smile...
(oh, it made me smile...)
Happy Nutella Day to you!




Wednesday, September 28, 2011

The Gallery - Home



This heart hangs in my favourite little nook in the hallway; I pass it wherever I go in the house...







our house isn't our ideal house
or our perfect house
but it is our home.

our home is where we are,
where are hearts are,
where we thrive.

our home is where we play,
where we giggle and laugh,
where we grow.

our home is messy but alive,
photos adorn the walls,
children's paintings, too.

our home needs to adapt and grow,
be more accessible with ramps and wider doors,
to be more eilidh friendly

our home is a humble building
but full of abundant love
and we are grateful
for many don't have
a place to call
home.









According to Crisis:
85,000 households were officially recognised as newly homeless by their local authority in England in 2008.
40,000 households were officially recognised as newly homeless in Scotland in 2007/08.
Approximately 500 people sleep rough outside on any one night.

Unfortunately studies show that homeless numbers are expected to rise over the next few years.  We are lucky to have a place to call home, please consider donating to Crisis or Shelter and spread a little love and hope around.




Please grab a coffee, take a seat and head over to wander around The Gallery today at Sticky Fingers....

Tuesday, September 27, 2011

Autumnal Hues



I adore Autumn: the moment I catch, in the corner of my eye, a single leave falling gently to the floor; the v-shape high in the sky of the migrating geese;  the emerging crispness to the morning; sunshine, blustery winds and speeding clouds; the much longed for snuggle of a cardigan and blanket as the evening cools; and the first autumn fire, flames dancing.

So often Autumn is associated with sadness - songs and poems of autumn are full of melancholy and loss: summer and all its youthfulness and possibility has passed, winter is on the horizon, the skies turn grey, the nights draw in, and we turn inward, hibernating physically and, perhaps mentally, too.  Life slows and we await the first signs of spring when the circle of life will continue again.

I feel so alive in autumn; it is my time!  The wind blows cobwebs away and I dance amongst the leaves, rejuvenated and hopeful, enjoying the  bountiful lushness of the season.  I hope that I pass on my love of autumn to N & E.  This weekend we picniced in the woods as the leaves drifted to the floor, we collected leaves of every shape and colour, and danced amomgst the trees, returning home with rosy glows and happy hearts; I hope that happiness is indeed infectious...

Enjoy the beauty of autumn the "season of mists and mellow fruitfulness"; it is full of life and joy.







"Autumn is a second spring where every leaf is a flower"
Albert Camus







"Autumn, the year's last, lovliest smile"
William Cullen Bryant







"Every leaf speaks bliss to me, fluttering from the autumn tree"
Emily Bronte




Monday, September 26, 2011

Sunday, September 25, 2011

A Reflective Sunday



I get to meet some pretty inspirational people through my job.  Yes, their burdens are heavy and their stories often heart-breaking , but I learn something from each one of them.  On Friday I had the pleasure of seeing a woman who carries her troublesome burden lightly, with faith and grace.  She reminded me that there is always hope, that hope is a good thing - perhaps even the best of things! - and that good things never die.  She talks of a journey, her life,  that will not see her reach old age but she lives present in every moment, trying to be as well as she can be for her family and for herself.  She trusts in God and He will be there to carry her when she can walk no further.  She has such strength and courage, with love, faith and grace in her heart.

I found these quotes today and thought of her: I wish that my faith could be as strong as hers  - and sometimes it is - for she is a remarkable woman.























Wednesday, September 21, 2011

The Gallery - My Guilty Pleasure











flowers of all shapes and sizes;
natural beauty blossoming -
delicate, fragile and miraculous.
with my last penny I would buy a flower,
drink in its beauty and cheerfulness
and gift it to someone else to enjoy.






"Every flower is a soul blossoming in nature." 
Gerard de Nerval






Todays Gallery Displays...

Monday, September 19, 2011

Attitude






I very much believe that my attitude is what has gotten me through the last year or so.  It started with post-natal depression and then WHAM! came Eilidh's diagnosis of Spinal Muscular Atrophy.  I could so easily have chosen the other road, the road to putting my head in the sand, to forgetting to live, to not striving for the best future possible.  But I didn't, "I took the one less travelled by, And that had made all the difference."  I am certain that my choosing a positive attitude has had a knock-on effect on my direct family and friends, giving us all the courage to walk with our heads held high and to be proud of ourselves.  With this attitude we realise that the bad days, the difficult times are fleeting and temporary, that we can do this, that we can go on living...  We survive the tough times by choosing each day the attitude that serves us best, knowing that that very same attitude makes the good days, the fun days all the more colourful.  I just wish more people would choose their attitude and embrace their day.



The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveller, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference

Robert Frost






Super Sundae Sunday

Yesterday was a Super Sundae Sunday - whoopeeeeeee!

The ingredients:

Family - of course - the more the merrier...
Sundae Glasses - beautiful!
Ice Cream - definitely!
And the fun stuff...  whatever your heart desires and would like to see in your sundae:
Chocolate buttons
Fudge pieces
Brownies
Strawberries
Fruit salad
Chopped hazelnuts
Chocolate sauce
Strawberry sauce 
and Sprinkles - yummy, yummy in my tummy!


A touch of creative flair, each to their own and voila!
Super "yummy in my tummy" sundaes.










It's becoming a family tradition and this tradition brings huge smiles to those involved and much fun to all who sit at the table.  I have to admit that I stole the idea from a very modern family - The Walkers - who, for me, epitomise family life today - crazy, dysfunctional and full of secrets.  The Walkers live in stark contrast  to the idyllic, country family life on Walton Mountain I once craved as a child with The Waltons.  However, the one thing that both families were excellent at was coming together as a family in times of joy to celebrate together and times of need to support each other.  Both families - and this I so admire - were also hospitable to strangers and relatives who passed by their door: no matter the hour or the inconvenience, no matter the sadness or happiness that they brought to their homes, these people were always welcome.  I hold both of these attributes close to my heart; my family, my large extended family, was once like that and, at times, still is.  I want to foster these qualities within my small, perfectly-imperfect family now, forming traditions that will last for many years to come, creating a home where anyone is always welcome, no matter the hour, no matter the need.








Saturday, September 17, 2011

Superpowers Defunct

The Superhero In Me Is Tired
So, so god-damn tired.

I stumbled across this image today and LOVE it!
It sums up how the last few weeks have been for me and for D, too:

We are too tired to fly with our pants over our trousers at present -
Normal Service Delayed...







by Rosie Hardy






Thursday, September 08, 2011

"'Twas The Month"

As I was writing the previous post I stumbled across this poem at Families of SMA.  It's more about SMA 1 but the feelings expressed are those felt by any parent coming to terms with life with SMA.


Twas The Month of SMA Awareness

‘Twas the month of SMA awareness, and all over the world
Against all new mothers, sweet babies are curled.
Their newborn clothes hung in the closet with care,
In hopes that they soon will be big enough to wear.

These babies are nestled all snug in their beds,
While visions of birthday parties dance in their parents' heads.
First bike rides, first dances, a high school graduation -
Perhaps even sending out their wedding invitations.

When at the doctor's office, there will arise such a clatter,
Specialists will be called, to see what's the matter.
Away for tests, these babies are whisked like a flash,
For it's something far worse than a cough or a rash.

Blood draws, MRIs, and so much more to go,
You shake your head, cry, scream out the word "NO!"
Something that's worse than any of your fears -
Your child's life may be over in less than two years.

"SMA" the doctors say, and you stumble on the words,
This isn't a name that you've ever heard.
Why weren't you tested, before your baby came?
Spinal Muscular Atrophy, you shudder at the name.

Now pulse ox, now cough assist, now bipap and g-tube.
They can't cough, they can't breathe, they'll choke on their own food.
To the therapist's office!   Break down insurance's wall!
Respiratory treatments, surgery, surgery for all!

As you learn your child, your worries will fly,
When you meet with an obstacle, you will fight - sometimes cry.
So up against the world, to the naysayers, say "Shoo!"
You and your child have lots of living to do.

And then, in a twinkling, your child will grow,
When all those doctors told you to prepare for them to go.
You realize that your child is the one making the rules,
And it's leaving these doctors stumbling like fools.

Though your child may never put weight on a foot,
They are stronger than most - you can tell with a look.
They are always moving forward, no time to look back,
So inspiring, they leave no time for you to slack.

Their eyes - how they twinkle!     Their faces - so sweet!
Their skin is so soft, minds as sharp as any you'll meet.
Mouths that may never utter a word,
These children don't need voices to be heard.

They have parents - our children are blessings bestowed.
To enrich our lives, to help us be bold.
To teach us that what we feel in our heart,
Is more than enough to give us a start.

To find them a cure, to show them we care,
To tell them no matter what, we'll always be there.
Fighting with doctors, with insurance, with school.
To give them the chance, to provide them the tools.

And to spread on the message, to get out the word -
Because we're their voices, we need to be heard.
Not just this month, though it's a good place to start.
Determination must be in EVERY heart.

So we'll fundraise, we'll write, we'll blog and we'll sell,
We'll bake, we'll sew, and always we'll tell
All about this disease.   Until SMA is out of sight.
And we can say - without a bipap, without a feeding pump, without a pulse ox -
"My child, sleep tight."

Barb Zahn



August


Two candles by h0pefulmummy
xx




August is gone now and the days take on an autumnal feel.  August was Spinal Muscular Atrophy (SMA) awareness month in the States. 


On Saturday 13th August people all over the States lit candles as the sun set to remember those lost to SMA and to give hope to those still living with the disease. I lit two candles that night - one for Eilidh and one for all the other children who have lived or who are living with this genetic disease.

1 in 40 of us are carriers.

As a doctor my first experience of SMA was in a neonatal unit; the baby boy had SMA 1.  My next experience was sitting in a neurology clinic with my daughter, "She probably has a myopathy or a muscular dystrophy.  It could be Spinal Muscular Atrophy."  SMA doesn't happen very often in the lifetime of a doctor.  In my lifetime, however, I see it every day.

Approximately 100 new cases are diagnosed each year.

Why don't we know more about SMA in the UK?  To be honest, I'm not very sure. SMA is one of  the most common life-threatening inherited diseases, second only to Cystic Fibrosis (CF) and yet we are very much more aware of CF as a disease and the affect it has on those who have it.  1 in 25 of us carry the cystic fibrosis gene; 1 in 40 the SMA gene.   Approximately 260 babies are born each year with CF; 100 babies per year are born with SMA. In CF, as in SMA, in any pregnancy where both parents are carriers there is a 25% chance that the baby will have CF.  Only half of those living with CF are likely to live past their late thirties: SMA affects individuals differently with SMA 1 children maybe living until they are 2 and SMA 2 children will perhaps live until adulthood.

So, knowing that Cystic Fibrosis and Spinal Muscular atrophy have similar genetics and that they are both life-threatening, I'll ask the question again, why are we not more aware of SMA in the UK? 

It's a question I have asked myself frequently since Eilidh was diagnosed with SMA.  There seems to be so little awareness of SMA within the general public but also, more worryingly within medical professionals and allied staff.  What can we do to increase awareness, promote and fund research and raise money to support those living with SMA?  I'm not sure; I need to consider this seriously and take action - small steps towards making a difference.  Do you have any suggestions?  Did you know anything about SMA before reading this blog?  What do you know of CF?  Are you surprised that so many similarities exist between SMA and CF?  I certainly was when I read up on the hard facts.  Now that I know though, how can I change our, the public's, way of thinking towards SMA?  Let me think it over...



"As one person I cannot change the world, but I can change the world for one person."
Paul Spear


Wednesday, September 07, 2011

"See you later, alligator!"




I saw my GP Dr Red on Monday.  Not only is she a wonderful doctor but she is a good friend and a fantastic listening ear too.  Yes, I'm on medication.  Yes, I get a repeat prescription sometimes but that's not really why I go and see her.  She listens to me, I mean she really listens.  She watches my tears fall silently and hugs me but then makes me smile.  She reminds me of the small things that make a difference in my day to day.  "Have some time without the girls." "Go to the cinema."  "Sleep when you can."  "Leave work on time - even just one night a week."  She knows me and she cares; she really does care.  So thank you, Dr Red for being a wonderful doctor and for being my GP - everyone needs a GP like you in their lives...




Back to Monday -
We said our goodbyes,
"See you later, alligator!"
"In a while, crocodile!" we replied
"Gotta go, buffalo!"
And I laughed, "I've never heard that one before"
"My son teaches me all sorts of things..."
Smiles all round -  
Our children really are the ones doing the teaching!.
This morning I found this and I'm smiling again...












Monday, September 05, 2011

LIfe is just a Show




I heard "The Show Must Go On" today - it would have been Freddie Mercury's 65th birthday - and it got me thinking...

Life is a show.  A production.  A circus. A drama.  A sitcom.  A pantomime.  With ups and downs, excitement and drama.  We all play our part.  We are all part-time actors, participating in the every day: genuinely ourselves at times but masters of deception too.  We can hide our feelings, burying them deep - despite our hearts breaking - and show the world that, with a smile, life carries on.  We can laugh and joke, chat and gossip, listen and console, but it can all be an act, our minds elsewhere.





The show, the greatest show on earth, stops as the front door closes behind us.  Safely in the security of our own homes, the act is over and real life prevails again.  Have we been worthy of a BAFTA or an Oscar today?  Have we deceived one and all or in fact fooled no one?  Time will tell.

Some days I'm not very sure where my act begins or ends.  Am I acting out a life I think that people want to see or living the life I have?  It's not always clear.  What I do know though is that I'm very good at saying "I'm fine" and carrying on...  I must be a reasonably good actor because reality blurs and I'm starting to believe that I am fine when, quite clearly (at least inside my head) I'm not.

My heart is breaking inside but life carries on.  With a smile the show goes on, entertaining and enthralling until the stage curtain falls on another day.  The show must go on!



"The Show must go on!
The Show must go on! Yeah,yeah!
Ooh! Inside my heart is breaking!
My make-up may be flaking...
But my smile, still, stays on!
Yeah! oh oh oh"










"To me, the most autobiographical line was: 'My make-up may be flaking but my smile still stays on.' That was true. No matter how ill Freddie felt, he never grumbled to anyone or sought sympathy of any kind. It was his battle, no one else's, and he always wore a brave face against the ever-increasing odds against him"
Jim Hutton









Thursday, September 01, 2011

Tears V




It's good to remember that it's ok to cry,
to feel sad
and angry
and raw.
In these moments we know that we are alive,
living
and
breathing
and feeling...
Emotions are normal:
don't ever let anyone tell you otherwise.
Don't listen to the "don't cry"s;
let the tears fall because they are real,
you feelings are real
and they aren't a sign of weakness...
I promise.






ps... i'm not permanently in tears... i just reflect (alot) on the moments when i am sad... moments that are brief but powerful and, hopefully, strengthening.