Thursday, August 25, 2011

Sleep alludes us

by clare elsaesser

"Sleep that knits up the ravel'd sleeve of care,
The death of each day's life, sore labor's bath,
Balm of hurt minds, great nature's second course,
Chief nourisher in life's feast."
William Shakespeare

Sleep alludes us all, it's restorative powers outwith our reach.  We all need nourished and soothed, refreshed and restored but we live sleep-deprived and the days - more often than not  - unravel before us.

I fear (we fear - D & I) that SMA has put an end to sleep as we knew it.  Having babies changed our view of sleep but now Eilidh needs checked and repositioned at night, uncomfortable as she slumbers on.

Sleep alludes us all.

Tonight I must go to bed early.

Tonight I need to sleep.

Sleep will come and soothe my soul...

Tuesday, August 23, 2011

Hard work

a good luck card from mummydeen

And so... back to work I went.

I didn't look back that morning as I left the house:
Kisses and waves and "good lucks" from the girls,
And a little concern from D perhaps,
But this was for me.
A new start;
The time had come for me to regain a little piece of myself long forgotten.
The me from before...
The me from before SMA.

A new job perhaps but I was welcomed with open arms back into the bosom of old familiar faces.  They know me and I know them.  They know that they can trust me, that I will work hard, that I will listen to my patients and care for them, and their families, until the end.  I know them: who to trust, who to talk to when care and sensitivity is needed, who to go to for a smile, a coffee or a cake.  Those I don't know have heard about me and they welcome me with open arms of expectation.

I do have some worries though:
Will I live up to every one's expectations?
Are they right to have such faith in me?
Do I have as much to give this time round?
I'm not sure...
I'm not the same woman who worked there five years ago.
I'm a mother now.
I'm a carer, too.
I'm older and wiser, but a heavy heart beats inside me.

I can only do my best though, can't I?
I can only give what there is to give,
Saving enough for me and my family,
Protecting myself from harm.

So... back to work tomorrow and, I hate to admit it, worries aside, I'm looking forward to it; It's my time.

Monday, August 22, 2011

I'm luckier than most

bedtime reading

There are times when we need reminding just how lucky we are;
How lucky we are to be living the life we have.
Sometimes I forget to remember that I am lucky - so ever so, ever so lucky...
After a sleepless night last night and lots of whinging and tantrums today, I lay down with the girls tonight and read "Did I Ever Tell You How Lucky You Are?", and there it was:

"When you think things are bad,
when you feel sour and blue,
when you start to get mad...
you should do what I do!

Just tell yourself, Duckie,
you're really quite lucky!
Some people are much more...
oh, ever so much more...
oh, muchly much-much more
unlucky than you!"

The perfect reminder than I am ever so much more luckier than most...
Thank you, Dr Seuss

Please stand by...

Wednesday, August 17, 2011

Tuesday, August 16, 2011

Dreams I

I dreamt last night.
A vivid dream stolen from my sleeplessness.
I don't dream very often anymore -
Or at least I don't remember my dreams...
As soon as I woke I wrote these words;
Not an exact description of the visual dream
But more the intense feelings that engulfed me.

the air is heavy and pressurised,
the sea turbulent
and the land waterlogged with tears.
i sit within my gilded cage
i watch the storm
and continue on.
yet it never truly moves on.
never ceasing,
never easing,
life carries on
without me.
i am flightless,
my dreams lying
around me.

Sunday, August 14, 2011

Happiness starts with me

Am I strong enough?
I'm not so sure...
I do know, however, that happiness starts with me,
Shining out from the centre
To embrace others around me.

Happiness starts with me.

Saturday, August 13, 2011

So, so tired...

via pinterest

sometimes i can't find the words to express how i am feeling;
"tired" just doesn't cut it...

I'm just so very tired.
I'm emotionally exhausted.
Every dream and expectation that I had as a young adult has fallen to pieces before me.
I thought that growing up would be easy.
I thought that being an adult would mean less decisions, less choices to be made.

I wish that people had been more honest, more open, preparing me for a life that might not be quite so rosy and full of joy.  I wish that I had been more prepared for the sad moments, the difficult times, the heartbreak.  Real life can be challenging: life isn't always a fairytale and there isn't always a happy ending.

We all have our moments and we may all be a a little lonely and heartbroken but we take each day as it comes, hoping that things might get better.  For some they do get better and dreams will come true.  For others they don't.

We need to make the most of our lives though, whatever happens.  We need to be mindful and present in each day.  It's up to us to make the most of our lives: the question is though, are we strong enough to try? 

Am I strong enough to try?

Wednesday, August 03, 2011

Hi-ho hi-ho, it's back to work I go

After 18 months I rejoined the work force today.
A new specialty.
A new job.
A new start.

I can't believe that it has been 18 months - I mean, I have done a few days of locuming here and there over the last 2 months, but nothing much really - since I walked out of my previous work place. 

18 months!
Where has the time gone? 
What have I been doing for the last year? 
What an earth have I achieved? 

But then I take the time to look back at the last year: it's been a hell of a year with many a challenge encountered!  
My daughter has been diagnosed with a neuromuscular disease which means that she is wheelchair bound and, though we may never truly come to terms with her diagnosis, we have met some wonderful people on our journey to date;
I started a Fund to raise £20,000 for a powered wheelchair which has meant that E has gained valuable independence;
I started blogging and found a place to be me, a place to reflect and grow;
We moved house and we created a home;
The girls started at a new nursery where disabled and able-boded children play and learn together, supported by the most amazing staff;
And more important than all of the above, we have created a tight family unit with two beautiful, independent, strong-minded little girls at its centre.

Taking each day as it comes,  I have continually moved forward.  I have lived every second and every minute of the last 18 months but now it's time to regain a little of myself, a little bit of me that has been forgotten about.  Today, with mixed feelings and a little trepidation, I returned to work... and I survived!

Tuesday, August 02, 2011


via pinterest

Be your own hero

sometimes you have to be your own hero.
i'm discovering that this is very true  -
we all have a hero within us.

we can save ourselves
and save our lives,
we can help others, too.

i am an adult:
i would like to be saved.
i would like my life to be solved.

at times i cry out for a hero to save me
and then i realise that i am that hero,
full of courage and strength.

i am the lead role in my life,
the principal character.
i am my own hero.

so why isn't it so easy to save myself?
i can help others
but i can't help myself...

i can cure others,
tending to their needs,
but i cannot cure my daughter.

where is the hero in my life;?
i need a superhero;
please help me find her.