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

Friday, October 01, 2010

It's the journey...

     “Don't walk in front of me; I may not follow. Don't walk behind me; I may not lead. Just walk beside me and be my friend.” 
Albert Camus

The journey I am on
is not a simple one.
As a child, I thought it was.
As an adolescent, I hoped it would be.
And now?
I know the
truth.
Even though it is
much harder
than I ever expected it would be,
I know that I am not alone.
My friends walk with me.
Beside me.
Just as I walk with them, too.
No one has a simple life.