Thursday, June 30, 2011

Two for Joy

dear mr magpie,
hello, mr magpie, how's your lady wife today?
please, please stop following me.
hello, mr magpie, how's your lady wife today?
fly away, fly away, fly away far:
hello, mr magpie, how's your lady wife today?
find a friend and live with joy;
hello, mr magpie, how's your lady wife today?
nest with your family and life will be rich;
hello, mr magpie, how's your lady wife today?
then visit me and I will smile once again.

Wednesday, June 29, 2011

Are we Selfish?

I read somewhere that grief is selfish.

Now, not for the first time, I am reminded of this.
We are so caught up in our own worlds of grief that we don't see the other's:

The pain and isolation of it;
The emotional and physical impact;
The impatience and insecurity that it brings.

We need to reach out to each other;
To touch and connect,
To help the other
And save us both.

Tuesday, June 28, 2011

The Freedom of Butterflies

via pinterest

 "Just living is not enough, said the butterfly.

One must have sunshine, freedom, and a little flower.” 

Hans Christian Anderson

Monday, June 27, 2011

A Home filled with Love

A beautiful weekend:
A busy house
Full of joy.
Friends & Family,
From Far and Near
(or not so near!),
For Lunch & Time together.
Beautiful and Uplifting.
A Home filled with Love.

via pinterest

Wednesday, June 22, 2011

A therapeutic friendship

I cancelled CBT this morning- yes, I am naughty!
I hadn't done my homework - yes, homework! I'm paying by the hour and I need to do homework?
And I couldn't be bothered talking - to my therapist at least...

I did something far more beneficial and therapeutic instead:
I saw Dr Knicker Bocker.
We chatted and giggled and drank coffee and ate cake and chatted and giggled some more.
Much, much more fun;
So much cheaper;
And the best sort of therapy a girl can ask for - time with a true friend!

Sometimes you just need to stop, think for a moment and do what's right for you : after all, you know yourself better than anyone else, don't you?

Tuesday, June 21, 2011


He's hiding away from me,
Trying to keep the pain
To himself -
To protect me perhaps...

At the computer,
On the Internet,
He browses,
Losing himself.

In the bath,
Secure and warm,
He reads for hours
'Til the cool water chills.

Life passes by:
He wants to move on,
Build walls,
But sadness prevails.

I don't know how to help: It's how I feel every day.  I hide in my sleep.  I hide in my blog.  I hide from life, but I need to stop hiding.  I need to help him come out from his hiding place because I cannot hide him too.
Splendid Hiding Place
by Ashraf Gohar Goreja
Please hide me
In your deep mystifying eyes
For I can't enshroud myself
Under the vast open sky
From thousands of intense
And startling calamities.

In my child play
I used to hide myself
Behind harmless
Insipid, cedar trees
And under the melting shadows of
Dilapidating walls of
Great alcazars.
Narrow ditches were favorite
Among all growing kids
Where we used to hide ourselves
Heedless, care free and avert.

But now
I am a youthful,
Grown up man
And my innocent childhood
Had it's farewell long ago
My appealing, hiding places
Take me as a kid no more.
I need now
An impregnable
Little fortress
That could render
My wandering soul.
Where else could I hide myself?
Please hide me,
In your splendid eyes
So I fear from miseries no more.

Monday, June 20, 2011

Thursday, June 16, 2011

Diary Days

I started "diary"ing again last year.
The Duchess of Bedford gifted the diary to me:
"Within these pages: a space to call your own".
And it has proven to be my space where my written word endures.

My diary is "something for me" amidst the chaos and discombobulation of life, offering a sense of freedom which I crave.  My writing is about me. Writing is my place to escape to, a sanctuary in the turmoil and I love it there!  I enjoy the writing, the words, the language - but maybe not the grammar or punctuation!

I never believed that I could write well but, realising now that my writing is for me, it doesn't need to be perfect...  Nor does it need anyone else's validation (I only realise this now after taking my blog live!).


My writing isn't about my creating memoirs but about life very much in the here and now:  it's about being mindful...

So... if my writing is for me, why am I sharing it?  Because I would like to be able to reach out and help others going through a similarly hard time so that they don't feel so alone and lost.  Now, understanding this, I ask myself "Should I share those early diary days here?".  I have reservations because the early days were dark days...  And yet, as I type this I answer the question myself...  I should share those times because those were the exact moments when I felt my most alone and needed to reach out to someone, anyone, to connect and know that what I was feeling was normal...

My decision?  I'll post a few of the early diary days - or at least snippets of them - not for sympathy or for validation but to share with those who might stumble across my blog in the future, crying out for contact and help...  I hope that they help...


We have a single magpie who comes to visit every day:
I so very wish that he would just fly away...

Wednesday, June 15, 2011

Daddy D - The Gallery

Daddy D, you are the world to us...
Your abundant love astounds us every day.
We belong with you:
Pefectly and safely and securely,
With love, laughter and happiness in our hearts...

we love you, daddy d!
now, always & forever
niamh & eilidh

"any man can be a father but it takes a special person to be a dad"

Please head over to The Gallery to check out the other entries for the theme "Dads"...

And to all of the wonderful dads out there - have a wonderful Father's Day on Sunday - I hope that you feel your children's abundant love.

Tuesday, June 14, 2011

Embracing "me" II

Tonight I found this which is really rather apt: I have felt the need to find out how to heal myself and go on living...

Last week I went back to CBT: long overdue perhaps but it was time to reach out for help.

You see, the little voice inside my head was back, crying out in repeat:

"i can't do this, i can't do this, i can't do this"

Whatever "this" was I realised that I could not do "it" alone and in isolation (even with the support of D, my family and friends).  The previous week had been proof of this; so many tears had fallen and, deep down I knew what I had to do; it was time to reach out and grasp my life

(what is "this"? I'm not very sure if I really know... living? living with heartbreak? living with a disabled child?  and, if i'm honest, i still don't know that "this" is... anything? everything?)

In theory I know, and am doing, everything that I should be  - well, I am kind of! -  but I need a little more help.  I need help to move forward; help to carry on living.

So... back to CBT - an act of kindness to myself - to carry on living (with some help) because I know that I cannot hide behind Eilidh anymore.  I cannot put my life on hold and not grab it wholeheartedly.  I don't think that Eilidh would ever forgive me - nor, for that matter, would I - if, in years to come I suddenly wonder where my life has gone.

Going back was easier than I expected.  I have come to realise that it's not "failure" to be back "in therapy".  I see it more as me having some "me-time" to embrace my humanity & frailty, to explore my feelings and attitude, to grab my life with both hands, to live wholeheartedly and to experience the beautiful things in day-to-day life because I know that they are there waiting for me to find them...

So this is me, grabbing life;
I promise to tell you what it's like...

Embracing "me" I

Monday, June 13, 2011


this is d.
he is the heart that loves me and the arms that hold me.
we have been through so much together 
and he gives so much to me
even when he has so very little to give.

I do so very much love you, d


A man stood in the doorway. 
A stranger yet familiar. 
Out of context perhaps?

"Remember me?" he says
Yes, of course
(oh, where do I know you from?)

"How's your wee girl?"
Oh, I have two little girls now.  We're fine.
(yes, I must have worked with you: I get the feeling that you KNOW me)
Actually, we've had a pretty tough year, my youngest has been diagnosed with spinal muscular atrophy and is going to be wheelchair dependent.
(you're nodding as if you already know, as if you understand)

"Yes, there's another meeting soon - I got an invite through today"
Oh, my goodness. I'm sorry, yes. yes, I remember you!
(yes, i met you at a new parent's evening, didn't i? you were the only one to talk to us... you were so kind to us.  i'm sorry, i don't know why, but i'm going to ask you the question (the question that is burning inside of me and needs to be asked); i hope that you don't mind...)

Does it get any easier?
(i'm sorry to ask, i can feel the tears, i'm sorry i'm going to cry...)
"Aye, it does, but it never goes away"
(my tears are falling silently)
"I didn't mean to upset you...  You and your husband, I can see you have great strength. I can see you are good people.  Someone told me at the point of our son's diagnosis - and now I'm going to upset myself - "special people get special children" and it's true.  The meetings are good; you get to meet other people going through the same..."
(i'm listening, i promise, i can't believe that i met you today on all days! i asked you the question i have been so afraid to ask and you answered me... thank you... i can see your sadness, it's palpable but you say that it gets better and i believe you...)

His son has Duchenne Muscular Dystrophy; they are four years down the line from diagnosis.
I hope that we'll see them at the next meeting...

Sunday, June 12, 2011

Lunch for 8

Lunch today was so much more than just food.

Today we shared a meal with friends.

Friends who have been there for us every step of the way over the last year and for whom we are so grateful.

We ate and drank; we watched the girls dance and prance; we talked and laughed; and we were very, very thankful for our friendships.

Lunch today was about so much more than just the food, it was about us sharing precious time with friends.

Friends who have become like family.

Saturday, June 11, 2011

Holding Hands

I woke shortly after midnight.
Eilidh was grumbling,
Uncomfortable in her bed.
I needed to go to her

My hand was in David's,
Hidden under the pillows.
For a moment I was invincible -
But I had to let go.

I went through to her,
Turning her body
As she slumbered on
And kissed her sweet face.

Then back to bed:
To warmth and security,
To my husband
Who gives me strength...

Tears III

Friday, June 10, 2011

The loss of normal

I have come to realise that mourning the loss of normal is ok.

It's not a sign of weakness or madness.

It doesn't mean that I am a bad mummy, wife, or friend.

It doesn't mean that I don't love Eilidh, David and Niamh.

What it does mean, however, is that I'm hurting and adjusting and learning and reflecting.

It's ok to feel this pain, this sadness.

It's ok to mourn this loss of normal.

Tears II

Sunday, June 05, 2011


I have a question.
Just one question.
Just one.

There is a question that I want to ask, but I can't...
I'm scared of the answer which is surely never.

If I don't ask it then no one can tell me the truth.
I can protect myself: we know that the truth often hurts, doesn't it?

Or maybe they'll just look at me, unable to answer
And yet their eyes will tell me everything - eyes are the windows to our soul.

So maybe it's better just not to ask... to protect myself...
But the question repeats over and over and over in my mind:

" Will this pain and sadness ever go away?"

The pain that hits when Eilidh asks to walk or go on a bike or cries because she doesn't want to go in her wheelchair. The sadness that I feel when she struggles to push her pram, or she reaches out for her baby doll and cannot lift it, or wants to put her pretty shoes on (shoes that she will never walk in).  Someone once said "don't sweat the small stuff" but actually it's the small, inanimate, day-to-day things that make me cry...

A week or two might pass.
Life will have been good.
Fun has been had.
No hurdles or obstacles encountered.


The enormity of Eilidh's diagnosis and the impact that it is having on all of us hits me square in the heart and I'm thrown in to a downward spiral...
I feel as if I am drowning - deeper and deeper...
My sadness feels bottomless and I am inconsolable.
It feels as if this, the pain and sadness, will last forever and that no one can help me.

But, just as suddenly, I stop spiralling downwards.
I reach upwards.
I start swimming, helping myself back up to normality.
To our normality.
To my family - for they are my lifebelt as I bob along on the sea of life.

Do I get stronger?
I hope that I do because if I don't then I'll have learnt nothing and I won't grow.
But I know that I am growing (I just need reminding sometimes);
I am becoming stronger despite my sadness
(which, I think, if I'm honest, will never go away).

Friday, June 03, 2011

Tears I

This week has been tough.
Many, many tears have fallen.
Selflessly and selfishly.
Futures robbed of joy:
I could see only dark days ahead
For one and all.

We have lived a year with SMA and it doesn't feel as if it is getting any easier.

A gaping hole still exists in my heart
and every time I look at Eilidh
I feel a little twinge of sadness.

I have to admit though that the raw pain has eased
 but in its place there is a persistant heaviness:
I am so very scared that that will never ease.

And the tears fall silently on...

A late entry... The Gallery

All that I am grateful for exists in a heart beat

(lub-dub, lub-dub, lub-dub)

Each heart beat contains:


Each heart beat contains these cherished virtues:
They are what make us all human.

My heart beats on and I am grateful
That each beat reminds me that I am alive
In the very moment,
Able to appreciate the world that I live in.

lub-dub, lub-dub, lub-dub

Follow the link here to The Gallery...