Friday, December 31, 2010

Ne'er's Eve

"New Year's Eve is like every other night: there is no pause in the march of the universe; no breathless moment of silence among created things that the passage of another twelve months may be noted; and yet no man has quite the same thoughts this evening that come with the coming of darkness and other nights."
Hamilton Wright Mabie


For me Ne'er is a time of reflection.
It always has been.
It has never really been about the celebration,
But more a time
To pause
&
Reflect.
On the past
and to
the future.

I do not know what the coming year has to offer me, my family or my friends.

But, I do know that whatever should happen in the coming year we will cope - with the love and support of others carrying us and our own love binding us strongly together.

I do know that I will have the strength to do as much as I am able to do for my family and friends for they are my life.

I do know that I will find my sense of purpose and direction. 

And I know
That I will dream again...
And aspire...
And hope...

So...  As 2010 draws to a close I remember
the happy times,
the sad times
and the love that has carried us through them...

May 2011 be full of love and laughter and happiness; whatever it may bring...

I Give Thee Thanks

This year could have been so different...


It has been a difficult and painful year
With Eilidh being diagnosed with
SMA
But I have survived
& perhaps
Grown stronger too.


I have been humbled by peoples'
kindness of spirit
and
generosity.


I have been carried high
by the love
and support
of family and friends.


I thank each and every person who has donated
or sent words of comfort or wisdom.
For they have made this year one to remember:
and I am trying so very hard to remember it not for the pain that it has brought me
but for the love and support that I have received ...

Wednesday, December 29, 2010

Start Afresh...

I try to
Start
Afresh
Each
Day...

To approach
Each day
Replenished
&
New.

A
Ever
New
&
Radiant
Possibility.

But
Sometimes
It's
Difficult...

Burdens
Of
Yesterday
Weigh
Heavy...

Not today though...

Today
Is
A
Good
Day...

This morning I found a magnet that my Godmummy gave me for Christmas...
Wise words to end the day and start the next anew:


"finish each day and be done with it. you have done what you could. some blunders and absurdities have crept in; forget them as soon as you can.  tomorrow is a new day.  you shall begin it serenely and with too high a spirit to be encumbered with your old nonsense."
Emerson

Tuesday, December 28, 2010

But My Christmas Present...

... from the girls, quite simply, touched my heart...

I have a fond childhood memory of my Grannie's button box:
An old Roses tin,
battered and scratched,
hidden away in the drawers in the sitting room.
Many a Saturday I would
rifle and rummage
through the tin,
looking for new treasures
and prized buttons.
Grannie would remember the
Dress
or the
Cardigan
the button came from.
They captured happy moments
and special times.

I remember the colours
and the
shapes
and the
feel of the buttons.
I remember
the time spent
with Grannie.

I wonder where her button box went
when she died?

I have my own button box now:
to rifle
and
rummage through;
To keep memories alive
and
"just in case"
a button should ever go astray.

My Christmas present from the girls this year?
A homemade
heart
of
buttons.





There has never been so tender a gift given...
Or received...
xxx

A house warming gift

A house warming present from The Uplifting Muse...
An elephant in the room for those difficult silent moments...
And a moment of clarity too:
Everytime I am with Eilidh
&
See her smile,
I forget about SMA
and
Remember why I am here:
To love & nurture her
And be her mummy...



courtesy of freya art & design





My Christmas Present...

... from D is perfect...
Considering that there really was nothing that I could ask for for Christmas that wasn't an impossible ask.
But I did ask for a necklace by Kate Smith which I have hankered after on and off over the year...
I loved the simplicity of the design.
The etched gold on silver.
The Circle...

by Kate Smith Jewellery


The circle reminds me of the koru - a symbol in Maori art.  The koru is a spiral shape which is based on the shape of a new unfurling silver fern frond and symbolises new life, growth, strength and peace.

The necklace and the koru are quite different but still the circles convey the idea of perpetual movement, everlasting love, and physical and emotional strength.

Seven months on from diagnosis day - yes, where did the time go? - I ask for strength and peace to live each day to it's fullest, safely encircled in the love of my family.  The necklace that I wear today reminds me that it is possible to live in such a way...

The necklace also reminds me of a reading from our wedding day; our 6th wedding anniversary is fast approaching... where DID the time go?  Happily and blissfully unaware of time perhaps?



Marriage Joins Two People In The Circle Of Its Love 
Marriage is a commitment to life, the best that two people can find and bring out in each other.  It offers opportunities for sharing and growth that no other relationship can equal.  It is a physical and an emotional joining that is promised for a lifetime.  Within the circle of its love, marriage encompasses all of life's most important relationships.  A wife and a husband are each other's best friend, confidant, lover, teacher, listener, and critic.  Happiness is fuller, memories are fresher, commitment is stronger, even anger is felt more strongly, and passes away more quickly.  Marriage understands and forgives the mistakes life is unable to avoid.  It encourages and nurtures new life, new experiences, new ways of expressing a love that is deeper than life.  When two people pledge their love and care for each other in marriage, they create a spirit unique unto themselves which binds them closer than any spoken or written words.  Marriage is a promise, a potential made in the hearts of two people who love each other and takes a lifetime to fulfill.
Edmund O'Neill

Friday, December 24, 2010

"Twas the night before Christmas"

Midnight is approaching;
Santa is coming.
The girls are asleep.

The shop has been built -
I wonder what they will sell?
The brussel sprouts deconstructed
Heston style.

David is wrapping presents.
I can hear the sellotape..
And me?
I'm sitting here
Thinking.

I have frequently been asked
"What's on your Christmas List?"
And I haven't been able to reply.
How do I ask for a miracle?
For Eilidh to be free of SMA...
I can't.
And the tears fall...

I don't want much for Christmas:
Peace in my heart;
Love for my family;
And joy.

A woodpecker in the garden
Would be a blessing too.
The woodpecker graces our family
From time to time
Wherever we may be.

I guess that I'll have to be patient
And wait & see
If she appears.
Or perhaps she's already here...

May your Christmas be merry and bright
And may all your dreams ( and miracles... ) come true in the coming year
xxx

The Fullness of Life

I have said before that I am not devoutly religious but I do believe that God is within each of us and that He surrounds us with his love, grace and peace

I have surprised myself this morning with this post...
it wasn't what I thought that I was going to write having just updated my Facebook status but I just heard this quote and found myself typing...

 “God is always faithful to His promises, but He often surprises us in the way He fulfils them.”
Pope Benedict XVI


The Pope spoke on Radio 4 and he has reminded me that God walks with my family and I no matter the circumstances we find ourselves in. 

He is with us during the storms and frosts of life and during the days when the sun shines bright and rainbows fill the sky.  

We need to continue to trust Him, to entrust our lives to Him and he will perform miracles through us and for us too. 

I need to believe in something...
Someone...

Listen to the Broadcast and see a Transcript here

Monday, December 13, 2010

at the edge of forever...


"Standing at the edge of forever
at the start of whatever
shouting love at the World."
Take That: The Flood

is how i felt at the time of diagnosis:
forever lay ahead of us
but no one knew what that meant.


i shouted at the world -
"love!"
asking and giving.
hoping and receiving.

with love,
forever isn't so lonely;
whatever it may bring...

Sunday, December 12, 2010

A Wee Reminder...

This is why the last few weeks have been mad...
This is why I'm busy chasing my tail...
This is why I don't have time for me...

"As one person I cannot change the world, but I can change the world for one person."
Paul Spear
I'm trying to change Eilidh's world...
And the world of those just like her...

Today I remembered why the last few weeks have been mayhem...
And you know what?
It's ok that I've been busy...
It's ok that I've not had time for me...
In the grand scheme of things, the last few weeks have changed my perspective on the world...
I cannot change the world that I live in, but I can make Eilidh's world a little brighter...
And that is what is important to me at the moment.

Saturday, December 11, 2010

6th November

A diary day...

"there have been so many moments when i have thought
"i need to write that down"
or
"i need to think about that more"
but then time passes on by and i forget or don't make the time just to sit down, be still, be alone and reflect and write. 
i don't know where time goes. 
it passes.
yes, it passes, but too quickly.
all too quickly. 
time won't stand still. i do not own it. neither can i control it. i, we, just have to live in each moment of time that we have.

i was thinking earlier if i am the best that i can be when i am with david and the little ones? 
i wanted, and still want to believe that i am.
i could tell myself that i am, but i know that i am not. 
i am damn good when i am with them and present in their love.
but, at the moment at least, i am best (probably) when i am alone with no one pushing or pulling me in this direction or that direction. 
i feel more in control. 
more at peace. 
is that selfish? i hope not: i don't think so... 
these moments alone allow me to be better when i am with them.  i can give more of myself to them, knowing that i have had time to myself.  time to be true to myself."

Diary Days

I have this blog
but I also have a diary.
A paper diary.
A real diary.
Something to hold.
Something that feels real.

A diary...
A place where all my thoughts and ramblings can find a place to just "be".
Where they are real and peaceful and mine.

There are some moments that I don't want to share with anyone.
Dark moments. Personal moments.

There are times that I cannot get access to a computer when paper comes a second best.

There are days when paper is the only thing I want to write on. 
When words flow easier and my mind can truly wander without a thought about someone else reading my ramblings.

But there are also days in my diary that I would like to share...
So enjoy them when I share them...
Maybe you'll see a different side of me...

Remember Me?

A long, long time has passed...
Not so long that I have forgotten how to write
But perhaps a little too long
In that I have
Forgotten
A little about
Who I am...


I've been caught up in the whizzy whirlwind that is
The Whizzy Wheel Fund.

I have been lifted high by my family, friends and utter strangers,
Supported and exalted
And so, so very humbled.


People have been
Good
and
Kind
and
so, so, so
very
Generous...


But amidst these crazy months I have lost a little bit of myself.
I have been so busy looking after others;
Raising money for Eilidh;
Thinking about the house move;
And Studying
That I have forgotten myself.
My Spiritual Self.
My Emotional Self.
My Physical Self.
And I am really not very sure when I can take the time to fix this.
To look after myself
And rediscover Me.
I know that I will though
Because I know how integral I am to this Family.
They need me
As I need them...

Tuesday, November 02, 2010

In therapy...

I realised yesterday, and not for the first time, what an important role Mrs CBT has played in my life over the last few months.

Firstly, on the morning before we found out about Eilidh's SMA she talked me through how to look positively at the future, no matter what the diagnosis.  The fact that I would love Eilidh no matter what, that I would provide her with a safe and loving home within a wonderful family, and allow her the independence that she deserved, able or disabled.  These realisations perhaps did not help me in the initial hours and days after our world was turned upside down BUT now, in the present,  they carry me through every day, giving me the strength to live with SMA.

Secondly, she helped me realise that, above all, my emotional well being is tantamount to our family happiness and well being.  So, everyday, I work a little on my emotional well being, and everyday I hope that I get a little bit stronger.

So thank you, Mrs CBT - I haven't thanked you in person yet, but I will.




Monday, November 01, 2010

How?

A coffee and a chat with a friend...
And snippets of the conversation which was, I have to say, so very uplifting!

"I don't know how you are coping; I don't know how I would cope"
"You would cope.  You would take each day as it comes.  You have to cope.  There's really no other way."

"How's you relationship with D?"
"We're good, We're coping, taking each day as it comes. We've never fought or shouted.  We're talking everything through openly and honestly.  Actually, I'm not sure how we are coping, but we are.  Perhaps it's because we frequently remind ourselves how lucky we are, how grateful we are for everything we have."

"When's the book coming out?"
"Guffaw... After we've moved, changed nursery, fundraised, studied, and I've taken care of my physical, emotional and spiritual health!"

"Spiritual health is really important, isn't it?"
"Yes. Definitely! I am not angry at God for what has happened. How can I be? I just need to look at Eilidh and I can feel no anger.  I have entrusted my children to God."
"You have such grace..."

I was reminded of so much today.
Primarily of how well we as a family are doing
and
How far I have come over the last few months. 

But I have to remember not to be too tough on myself...
I am doing well...
We as a family are doing fantastically...

Taking each day as it comes.
Being grateful for all that we have.
Remembering to look after ourselves
Physically,
Emotionally
&
Spiritually.
And living with grace.

What a coffee and chat!



Wednesday, October 27, 2010

Alone...

I'm feeling quite alone at the moment
Which is,
quite frankly,
ridiculous.

I feel as if I am failing
At something:
I'm not sure
What.

Life
is
too
Busy.

I'm
trying
too
Hard.

To
be
a
Superwoman.

Superwoman.
Superwife.
Supermummy.
Not Superme though.

I'm
taking
on
Too much.

I'm making
Life
too
Difficult.

I
feel
so
Alone.

And
yet
I'm
Not.

People
want
to
Help.

I
need
to let
Them.

Remember:
Hope
in
Mankind.

Faith &
Hope.
Love
& Grace.

I'm
SO
not
Alone.

Friday, October 22, 2010

The Painting on the Wall




I bought this painting by Ruth Mulvie, a Glasgow based artist, from scotlandart.com just after Eilidh was born.

I was drawn to it;
It represented everything I wanted for Niamh and her little sister.

Friendship.
Companionship.
Play.
Fun.

After Eilidh's diagnosis I wanted to take it down from the wall and hide it away.
Never to lay eyes upon it again.

It represented everything I felt that Eilidh and Niamh had lost
along with the diagnosis of SMA.

They would never
walk together
or
run together
or play like the girls in the painting.

It hurt to look at it; my heart would ache.

But it has stayed on the wall
For me to see every time I go up the stairs.

I don't hate it any more.
It does, however, still makes me sad.
I still feel a sense of loss,
which I cannot hide away
or hide away from.
I do not want to hide the painting away; I can't.
For I am sure that Eilidh
walks & runs,
and dances & plays
at night while she sleeps
and dreams.

So I will dream, too of those moments when she is free of SMA.
Especially when I look at this painting.


Thursday, October 21, 2010

Ups and Downs

So many ups and downs today.
Tears and happiness too.

I talked of trust and placing my trust in God.
I'm not sure that I trust Him with my life
But
I implicitly trust Him with the lives of
My beautiful little girls.
I know He walks with them...

"God help us
If our world should grow dark
And there is no way of seeing or knowing.
Grant us courage and trust
To touch and be touched
To find our way onwards
By feeling.
Amen."
Leunig

Smiles...

Having seen these cute accessories on Kelle Hampton's Page I needed them!

Of course I didn't need them, but I wanted them...  I desired them, knowing that the girls would look so cute with them on.

The hairband and necklace are adorable and handmade by LillianEveDesigns on Etsy - they arrived a couple of weeks ago and have been pretty much worn every day since...

Well, maybe apart from Eilidh's - she's cute and adorable and loves clothes but she's not too sure about the hairband...











Beautiful things make me smile beautiful smiles.
And beautiful smiles make a day even more beautiful:
Whatever else might be going on...
Be thankful
&
Grateful.
I am.

Wednesday, October 13, 2010

"The Journey"

I've been thinking a lot about this journey we are on with Eilidh and SMA.

I do believe that we are all on a journey, the destination being unknown and, relatively unimportant, but we will be safe when we get there.

There may well be a moment when your life changes forever, when life as you know it will become incomprehensible and you will feel so very, very lost.

Maybe it has happened already, maybe this moment has already been.
Perhaps it is still to come and if it is still to be

Hopefully, and I do so hope for this for those who are lost, you will realise what has to be done and you will take a step - perhaps just a baby step, but your first step - towards taking control, knowing what you have to do, knowing that the choice is yours, knowing that you can move forward.

You will be scared and it will be daunting and feel so uncertain but you can and will do it.  Of that I am certain because my life has been changed forever, I have been deep within the moment full of fear and confusion and pain.  I have felt so lost that I wanted to bear the pain no longer.  And after a while I decided to take a step - no, I needed to take the step because I was leaving the life that filled me with joy and love behind...
 
I found this poem when I first moved to Glasgow at a time when I felt awake and ready to explore, and I went looking for it again last week in a moment I needed to feel those feelings again.  It's in a fantastic little book "ten poems to change your life" by Rodger Housden

"One day you finally knew
what you had to do, and begun,
though the voices around you
kept shouting
their bad advice -
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
ar rhe very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognised as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do -
determined to save
the only life that you could save."
Mary  Oliver
There was a day, a day since Eilidh's diagnosis, when I realised that I was losing my life but I "finally knew what (I) had to do, and began"

I make it sound so easy, it wasn't but I took it slowly, knowing that I had to save my life for, primarily, my family. 

It sounds melodramatic: if you have been there you will know exactly what I mean. 

But honestly? 
It was the only thing that I felt that I could do.
Move forward on this journey with Eilidh and SMA.
And do you know something?
You can do it, too. 
I believe in You...

P.S.  Phew...What a pep talk for a Wednesday Morning... I have given myself hope for today and a future for tomorrow...

Tuesday, October 12, 2010

"I'm sorry that things are difficult"

A simple card
From a beautiful soul:
She humbles me.

This woman is our cleaner at work.
The only one from work to contact me in the early days.
And now the only one to offer a donation.
The only one to
"wish (us) all the best and hope and pray that things go well for (us) and (our) lovely family".

I cried as I thought of her kindness and generosity.

In this big and difficult world there exists the simple souls who give so much to others in the hope that they can make the world a little better for these people.
I stand in awe of you.

Thank You.

Tuesday, October 05, 2010

Newborns

I've been looking through picture of Niamh & Eilidh today, pausing for some time over the ones of them not even a day old and reflecting...

Newborns.
Ever possible futures;
Radiant and dazzling;
Long and effortless;
full of
love
and joy...
We wish for so much from the moment they are conceived.
We dream their futures
and we hope for more.

I have brought two very different and unique little girls into this world:
both full of light and joy,
love and hope
and grace.
Both strong-willed and determined,
with their futures in their hands.
I will do the best and be the best for them
because
I see the best in them.


niamh - 14th march

eilidh - 26th january

I rejoice in them and pray that their journeys are not too difficult or painful.
I hope that they will find their paths in this world, each unique in its own way, enjoying happiness along the way, finding gratitude and peace in every moment.

Their futures are ever possible and unique.
SMA or no SMA.

Monday, October 04, 2010

Head Whizzing

I think that I have too much on.
Too much going on in my head.
Too much to think about,
To do,
To plan.
Too much;
Just too much.
It feels so endless.
I wonder if this is what life will be like now?
But you know what?
It's a labour of love.
Living.
Nurturing.
Loving.

And there is so much going on...

The Whizzy Wheels Fund went live last week and despite the blog getting fewer and fewer page views over the week we have still managed to raise over £6000 which is totally awesome.

It is interesting to see who has donated and who has not, and who has donated what amount.  I realise that it in no way reflects on how well a person knows us or how much the person may love us; I believe that they are donating what they can to a cause that they know to be good or close to their heart.  People, in the main, are sincere, good, kind and very generous, and I am grateful to each and every one.

Eilidh has been getting used to travelling in style in her Panthera Micro.  She has been mischievous to a fault, getting up to the nonsense you would expect any toddler to be doing... chasing her sister, pulling things off tables, sticking fingers in sockets, touching hot radiators, guttling in toilet bowls, pulling saucepans out of cupboards and generally leaving a trail of destruction in her wake.  Some parents would be annoyed by this but me?  I am delighted and am cherishing these minx-like moments because, at last, Eilidh is independent!  Hooray! 

We have a barrage of hospital visits this week... Occupational therapy (no, not community OT - we are still on a year long waiting list "Eilidh is currently 30 in the waiting list. Please phone back in the New Year").  Neurology with Dr Neuron and the MDC fairy godmother.  ENT to sort out the snoring problem...  oh, I so wish that I didn't mind going up to the Hospital - but that's a whole different story...

And tomorrow we have the "Paper" coming to do an interview... I'm rather uncomfortable about being in the papers... mainly, I have to be honest, because I don't want my slummy mummy photo in it - why, oh why can they not just put some photos of my beautiful girls in?  I wanted to be in a broadsheet but apparently, no, they only have somewhere in the region of 30 to 50,000 readers compared with the "Paper" which has over 300,000.  How can my wee blog compare?  It can't.  We need to get Eilidh's story out there both to raise money for her Whizzy Wheels but also to raise awareness of SMA.

I could go on about my whizzy head and dances we are planning and people we are having to dinner and letters I need to write, but I don't want to bore you... I'm off to bed... I'm away to shut down my whizzy head...

A little prayer...

... from a wonderful book I found while on holiday.
I stumbled across it in Oxfam, leaping out from amidst hundreds of other books.
"When I talk to You" by the cartoonist Leunig:

"God rest us.
Rest that part of us which is tired.
Awaken that part of us which is asleep.
God awaken us and awake within us.
Amen."

Saturday, October 02, 2010

A little care "package"...

from Canada arrived last week
on a day that it was much needed
and most welcome.

A little card...
"Blessed is the influence of one true, loving human soul to another."
George Eliot
to say that I am a blessing...

What a pick me up!

And a little tranquility to bring me peace of mind - a tiny tealight packed full of lotus flower, lily, jasmine, peony, rose de mai, tuberose, orange blossom and ambrette... divine, divine, divine!

Thank you flowergirl...
I love you so very, very much
and
miss you even more
xxx