Sunday, February 27, 2011

Swings and round-a-bouts

I used to love play parks...

Swings
and
Round-a-bouts;
Swishy slides
and
Bouncing trampolines;
Children running
Here
&
There;
Their squeals 
and
Infectious giggles;
Come rain
or
Shine
I loved play parks.

Not any more.
I have grown to despise them.
They are everything that Eilidh can not do.
I am surrounded by able children
Running,
Jumping,
Hoping,
Sliding.
I cannot share their joy,
Their excitement,
Their fun...

Today, for the first time, Eilidh wanted to go on the climbing frame.
She pointed and shouted
"shot, shot, shot!"
She saw the other toddlers:
She wanted to walk across the bridge
And she was adamant...

My heart ached -
A deep, deep pain -
And the tears fell.
Sobbing, I carried her away,
Hoping to distract her.
Hoping to distract myself.

How do you explain that she can't?
That she can't walk
Or toddle with her toddlers?
That she will never walk or run or hop?
I can't...
But I know that the time will come
When she will start to ask questions -
Hopefully we'll be ready to answer them.
For the moment though
I don't like play parks...

Friday, February 25, 2011

Today



Today is a big day.
The last day of being a GP Partner.
{Big sigh of relief}
Thank Goodness...

I haven't worked in just under a year.
I walked out wondering whether I would be back
But never did I expect the events
Of the last year.

I have had my fair share to contend with
Over the last 12 months:
Post-Natal Depression;
Low confidence;
Increasing anxiety;
Eilidh's Diagnosis;
And so much more that I can not and will not open up to public view...

I haven't been able to give any of myself to my Job.
And if that wasn't possible then there is no way that I could give my all to my patients;
The reason I am in Medicine is to care for my patients and do my best by them
And I wouldn't have been able to do so.


This year has been about my family,
finding my inner strength
and holding my loved ones close.
Things have been put in perspective...


So, what next?
I'm not sure...
I need to take some time to see what is right for all of us...
My family is all that truly matters...

Thursday, February 24, 2011

Exactly....

I *superlike* this...

It's exactly my way of thinking!

It's just sometimes a little hard to remember that

My Glass Is Always Full!





envelop.eu

Doing Nothing.. Not an option...

In the early days
I wasn't sure what to do
To make things better,
To help,
To stop the pain.
But I knew that I had to do
Something.
Anything.

Each one of us
Will cope with a
Difficult situation
Or time
Differently.
We cannot know what
We would do in a
Similar Situation.
We do not know how the
Other person is feeling
Or how much support they have
And we can never fully feel
The other's
Pain.

But we do know that we would probably do anything
For our loved ones,
Our family,
Our friends,
And for others in need.

What I realised quite early on was that I couldn't just sit back and do nothing...

Oscar Wilde
"To do nothing at all is the most difficult thing in the world."

Wednesday, February 23, 2011

A Lady & a Duchess

Duchess of Bedford


I whiled away the afternoon with the lovely Lady of Camptoun and a Duchess of Bedford

Life was good.

I was content and the violet hour stumbled upon us:

When anything was possible...



"This is the violet hour, the hour of hush and wonder, when the affections glow again and valor is reborn, when the shadows deepen magically along the edge of the forest and we believe that, if we watch carefully, at any moment we may see the unicorn."
Bernard DeVoto


Now that I am a Lady(of Leisure) who does lunch and afternoon tea occasionally,  I will be honest and tell you about how I met the Duchess of Bedford...

It was with another Lady Muse - a dabbler in afternoon tea and, when in need, cocktails, and purveyor of all things fine - while we were out one evening partaking in some therapy. 

The Lady Muse and I stumbled across the truly floral and sublime Duchess - a blend of  the wonderful cucumber and rose botanicals of Hendrick's Gin, a tincture of Earl Grey Tea, fresh lemon juice, maraschino and St. Germain elderflower liqueur - while at The Blysthwood Hotel... 

Simply Divine!
And highly recommended...

And thank you to Lady of Camptoun and Lady Muse...
Thank you for sharing the violet hours with me.








Sunday, February 20, 2011

Trust

I have thought for a long time that I was the one putting my children in God's Trust; today, while listening to the radio, I realised that actually He has trusted me with them...

This thought reminded me of a poem I read many moons ago while at Secondary.  I won't quote it all but the verse I am relating to is this:

"I've looked this world over
In search for teachers true,
And from the throngs that crowd
Life's lanes, I have selected you.


Now will you give him all your love,
Nor count the labor vain,"
Edgar Guest 

I have to think, though, that we will all learn from Eilidh, just as she will be guided by us and, perhaps, is she so chooses, by God above too.

Friday, February 18, 2011

"love and go on"

A close friend of mine died the autumn before i got married.
6 years on
i still remember the phone call;
the pain i felt and
i vividly recall the wind blowing through the trees outside my flat.
and even though i knew that she had gone, i phoned her and left a message saying my goodbyes.
i loved her.
she was my friend.
she was larger than life itself.

why am i remembering her today?
i found a poem that was read at the service held to celebrate her life;
the words written on a scrap of paper,
buried deep in a drawer.
i wanted to remember her because
i know that she would be proud of me,
proud of my family,
proud of the life we are living and
the story we are telling.



"She is Gone



You can shed tears that she is gone
or you can smile because she has lived.
You can close your eyes and pray that she'll come back
or you can open your eyes and see all that she's left.
Your heart can be empty because you can't see her
or you can be full of the love you shared.
You can turn your back on tomorrow and live yesterday
or you can be happy for tomorrow because of yesterday.
You can remember her and only that she's gone
or you can cherish her memory and let it live on.
You can cry and close your mind,
be empty and turn your back
or you can do what she'd want:
smile, open your eyes, love and go on."

Anonymous



love the end...

"smile, open your eyes, love and go on";

it's a good mantra for life.




This relatively unknown poem was chosen by the Queen to be read at the Queen Mother's Funeral in 2002, chosen because the Queen felt it encompassed how the nation should reflect upon her mother's life. Link here to see a BBC News link.

Thursday, February 17, 2011

so, so vivid...

it was so, so vivid.
i could reach out and touch it -
almost.
i was so happy.
we were all rejoicing.
eilidh was walking,
toddling around our sitting room,
surrounded by family,
with a huge cheeky grin on her face,
so very proud of herself.
it felt so, so very real.
the diagnosis was wrong;
not entirely, however.
SMA 3 rather than SMA 2.
but this offered us steps.
eilidh's first
independent
and miraculous steps.
what a dream!
but only a dream...

Wednesday, February 16, 2011

Morning!

"morning time! it's time to get up!"
grumpily i reply,
"is it?"
"my sun is up..."
niamh has a grobag clock:
she sleeps with the stars and
rises - in theory! - with the sun...
i lift my head,
 "it's still dark..."
"mummy, the sky is bluer than black 'cause the sun is rising..."
sure enough, I can't argue with that;
I open the curtains and the sky is the colour of a soon-to-be-spring dawn.
A new day...
Niamh, my love, I am so proud; you're pretty smart, you know...

Tuesday, February 15, 2011

Happiness...

Bedtime tonight and "Augustus and His Smile"...

A wonderful book by the talented Catherine Rayner: a favourite book of ours with a simple message and beautifully exquist illustrations which make us all smile... isn't Augustus gorgeous?






Happiness is everywhere...

I asked Niamh what makes her happy
"When I smile."
What makes you smile?
"Morgan. Morgan makes me smile.
My house.
My music.
My books.
Eilidh, Daddy and Mummy"

Simple and Pure.
In the day-to-day pleasures.
Happiness, like I said, surrounds us...

Blue News

"A good day?" she asked in reply to my good day news...
News that Eilidh's Blue Badge had arrived...






No more parking tickets when Eilidh is in the car with us -
shame that D and I have both had tickets in the last month though :(

Parking on single and double yellows legally...
Eligibility to park in disabled spaces and argue with those not eligible.

How could we be anything other than excited?
Black humour perhaps but you have to look on the bright side of life, don't you?

Monday, February 14, 2011

Happy Valentine's Day!

We all have fragile hearts.
Full of love and joy.
Bursting at the seams.
Beating strong.

Today we should take the time
To remember what is important to us;
What fills us with love
And brings joy to our lives.

Equally, we need to know how to
Protect our fragile hearts;
How to
Strengthen them
& Nurture them.

We need to know ourselves &
love ourselves
And then
We can love others wholeheartedly...




Rob Ryan's Fragile Heart

A handwritten envelope...

Oh, you know how much I love
A handwritten envelope...
And that one should arrive today...
Well, I am blessed!

From a woman I call cousin, and yet she is infinitely more to me;
From a woman I would call sister...

Thank you for brightening my being, little sister.
"this is my wish for you:

comfort on difficult days,

smiles when sadness intrudes,

rainbows to follow the clouds,

laughter to kiss your lips,

hugs when spirits sag,

sunsets to warm your heart,

friendships to brighten your being,

beauty for your eyes to see,

faith so that you can believe,

confidence for when you doubt,

patience to accept the truth,

courage to know yourself,

love to complete your life."



anonymous

Your love, for me and my children, brings joy to my life.
xxx

And the waiting time...

And the waiting time to the point of assessment by Social Work Occupational Therapy is...

drum roll please...

"27 weeks from the date of this letter"

sorry?

Can you repeat that please?

"27 weeks"

excuse me? did I hear you guffaw?
Because I certainly did when I read the letter...
 
At this time, as we as a society are trying to improve services for people with neuromuscular conditions this, quite frankly, takes the biscuit!

So what's my next move?
Let's kick some butt!

Sunday, February 13, 2011

What is important in life?

What is important in life?
Love.
Love for my husband.
Love for my children.
Love for my family.
Love for my friends.
Love for others.
Love is important.

“A hundred years from now it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove...but the world may be different because I was important in the life of a child.”

Forest E. Witcraft

Tuesday, February 08, 2011

Rant...

We have waited nearly 8 months to see the community occupational therapist...
8 months for a little girl with spinal muscular atrophy to be assessed.
A little girl with special needs.
Is that acceptable?
I don't think so!

So I was pro-active,
Bolshy perhaps,
And asked the Neurological OT to see Eilidh.
She did as a favour to our consultant.
She was lovely,
Quickly and easily sorting out initial seating and bathing problems.

Meanwhile, elsewhere...
Community OT...
"Eilidh is currently 31 on the waiting list, phone in three months, after the new year and we'll let you know where she is on the waiting list."
No.
Not acceptable.

So the community appointment came out of the blue
And on Friday we saw a lovely OT who assessed Eilidh:
She did what she was said that she was going to do -
this always impresses me - oh! I have such low expectations...
But then...
"Now you need to self-refer to Social Work OT for home adaptations..."
Excuse me?
Self-refer?  Self-refer?
I've waited 8 months to be told to phone them myself?
You've got to be joking me?
I could have been told that 8 months ago!
Why wasn't I told this?

And a deep breath...

In
&
Out...

I phoned Social Work on Monday.
They took some notes:
They'll send out a letter telling me how long it will be until we are assessed.
But they had to tell me, they had to warn me that there is quite a wait...
Excuse me?
Quite a wait?
"But I've waited 8 months to be told to self-refer and now we have to wait for longer?"
"Yes.  But I can tell you that we are hoping to recruit more staff and that should help waiting times."

Aaaaaaaaghhhhhhhhhh!
Sorry but WTF?

Why an earth is the Occupational Therapy Service in such dire straights?
Is it really just the lack of staffing that's the problem?
Is it simply that the resources, the funds aren't available?
Whatever the cause, it is not acceptable that a child with a new diagnosis of SMA was put on a waiting list of 8 months for a first assessment.
It is not acceptable that the information that we can self-refer for Social Work OT for a home assessment and adaptations is not passed on at an earlier stage.
It is just not acceptable...
And what am I going to do about it?
Let me think about this...

Thursday, February 03, 2011

All it takes...

All it takes is a moment. At the blink of an eye I am reminded about Eilidh's disability and SMA.  I am reminded of her lack of mobility and her dependency on others. 

And you know what? It sucks!  It totally and utterly SUCKS!

Today she has fallen out of her heathfield chair - all her own fault, I may add... if she swings in it, she's going to tip over, isn't she?  

I couldn't get her into her pushchair - I was all fingers and thumbs and her legs just wouldn't move; I got more and more frustrated at myself and SMA and the cruel blow that Eilidh has been dealt.  It's so unfair...

She has shouted at me all day:
"out! out! out!"
She's becoming increasingly frustrated by her lack of independence, and that's her shouting from her wheelchair!

I could go on, but I won't. 
I choose not to.
Life isn't so bad.
Today is just one bad day amidst so many good days.
Today is nearly over:
Tomorrow is another day with SMA;
Here's hoping that it's a better one...

In the night...

I do not
Grudge
These moments
In the
Middle
Of the night.
The house
Sleeps on
And the World
Spins
Around us.
Appliances
Buzz
and
Whirr.
My husband
snores.
Niamh slumbers on.

Eilidh
is in my arms,
Cuddling
and
Snuggling.
Neither a symphony
Nor a cacophony
She snores
And purrs.

I try and
Snatch the
Good
From the middle of the night.
But my mind
Races
and
Ruminates.
I can not
Silence
My thoughts.

I want to be
Asleep,
Wrapped in
Warmth.
Sleep brings me
Peace.
A place to
Escape.
But sleep
Escapes
Me
for the present.

I try to be
Present
in the 
Present.
For me.
For Eilidh.

Eilidh
Sleeps
On,
Snuggled
into my
Body:
I find
Peace
in the
Moment.

Tuesday, February 01, 2011

For a moment...

For a moment I forgot...

I walked into the Tweenie Room
And saw the
Tweenies
Toddling...

Cutie 1,
Gorgeous 2,
Rascal 3,
Rough & Tumble 4...

For a moment
I expected Eilidh to
Toddle
Around the corner...

I really did.

For a moment
I forgot about
SMA and
Whizzy Wheels.

I trully,
trully
expected her to
Toddle...

But there she was
Wheeling around the corner.
Beautiful and Happy.
Proud and Independent.

And I remembered:
Not about SMA
Or Whizzy Wheels,
But about how much I love her.

I love her
Unconditionally.
Eilidh is Eilidh.
And she fills me with Joy.