Monday, December 31, 2012

Ne'er Weather

Ne’er has always been turbulent;
The world outside
Reflecting me within 
All it's natural glory.
Winds blow
Not so silently,
Or peacefully,
Through the trees;
Across the land
And across the days of my life.
This year is no different;
The weather echoes my feelings
Instinctively perhaps.
The wind blows,
But this year the clouds are so very low
That they gently touch my head
And I wish that I could hide amongst them,
Seeking to be veiled.
The rain falls like tears,
Heavy at times
With such power that
A palpable symphony 
Exists within my soul,
Drowning out my 
The rain eases. 
The tears have not stopped:
They drizzle silently on,
Ever present
Never far from the sky
Or my ethereal soul...

Sunday, December 30, 2012

It's confirmed!

Following on from my letter to No.10 and my reply from the Department of Health in October, Estella's mummy and daddy today confirmed in their post New Dawn, New Day that the UK National Screening Centre will review SMA screening programmes including pre-conception, antenatal and newborn screening for SMA, stating that a public consultation will take place in the new year.  This is a big day for SMA and for Estella's parents who have worked tirelessly to raise awareness of the genetic condition that robbed them of their precious baby girl.  It is a big day for the 1 in 40 of the general population who do not know that they silently carry the gene for spinal muscular atrophy and that subsequently, should they fall in love with another carrier and have a baby, they have a 1 in 4 chance of giving birth to a child with SMA, a condition which will potentially, depending on the grade of SMA, limit the life of their cherished child.  This public consultation gives hope to many and hope, as we know, is an extremely powerful force.

Monday, December 24, 2012

Merry Christmas to one and all

Our Christmas card this year...

May your Christmas
be merry and bright.
May it be full of fun and joy 
and the birth of baby Jesus 
and love.


Thursday, December 20, 2012

It's Not From a Store

Niamh and I read "The Grinch" for the first time last night - it's our new Christmas book to share as a family, adding to our ever growing library of books celebrating Christmas.  While it's not my favourite Dr Seuss, I thoroughly enjoyed it as a book but it was the message it spoke of that resonated deeply:

Christmas is so much more than presents

I wanted to share this message again with her:

"so, Christmas is so much more that presents..."

and I went on to ask her "so what is Christmas for you, N?"

"fun and joy and the birth of Jesus and love"

and I rejoiced, for my girl, as young and tender as she is just now, got Christmas!  She understands the essence of the Christmas spirit... I wonder though, cynical as I may be at times, how long this innocence will last?  For the moment, however, I will celebrate it, remembering that Christmas is something much more than presents; instead it is something we feel inside when we are stand still amidst the festive season.  Take time to stand still over the coming week and truly feel Christmas for it is everywhere...

Monday, December 17, 2012


Pondering on a drive east on Saturday, I had to go and open my mouth, didn't I?

"niamh, would you like to do another sport?"

bouncing up and down in her car seat, she replies; "emmm, gymnastics?"

then eilidh butts in, "mumma, can i do gymnastics, too?"

Struggling to know what to say, I mumble in response, "no, eilidh, you're not strong enough..."

The ever protective big sister quickly steps in, "eilidh, you know, some people are just different... like... you like pickles and i don't like pickles... mummy, what doesn't eilidh like?"


"yes, you don't like raspberries and i do.  some people like things, some people don't...and i can do things that you can't... i can walk: you can't... i can run: you can't...  but we are all different... you can go in a wheelchair: i can't... you can spin in your  wheelchair: i can't..."

"but i don't want to be in my wheelchair..."

The silence was heavy; the ever present fracture in my heart opened, eilidh cried and I couldn't stop, journeying forward on the M8, aching for my little girl who will only ever cartwheel in her dreams.

Saturday, December 15, 2012

How are you?

Sometimes it's definitely easier just to say
"I'm fine..."

but those in the know know that you are so far from fine and although they don't know the precise details of the perfect storm of emotion raging inside you, they know not to ask more, they know not to delve but instead to back off and give some distance, knowing that you will let them in when the time is right, when you are able to talk and give more.  For the moment, however, that "I'm fine..." might as well be a "Leave me alone!" or a "Don't ask!" or even a "F**K OFF!".  

So remember this: if you have a friend who says "I'm fine..." and you are worried about them; be a friend, check back on them - just in case - and let them know you are there for them: I promise you, you won't be turned away.

ps... this is just like saying "i'm tired..." when really you are just a little sad...

Wednesday, December 12, 2012

Coughs and Splutters

The temperatures are dropping and jack frost dances across the land; Christmas is nearly upon us.  Unfortunately, however, winter also brings snotty noses, coughs and splutters and for a little girl with SMA, it can be a worrying time.

and the coughing begins:
a little niggle first,
then a tickly cough,
and then more
a good chesty, rib rattling cough
cough, cough,
cough, cough, cough:
something that we could - 
and perhaps should? -
be afraid of;
something that could quite easily become more.
but i look at her:
she is eating and drinking and smiling and laughing.
until one night:
she wakes up coughing 

and choking 
and crying.
her temperature is normal, her pulse unaltered, her breathing steady,
but she won't settle and I won't settle until she does.
a little sip of water stops the tickle - 
until the next one.
she's wide awake;

i crave the gentle peace of my slumber.
we chat:
Christmas, birthdays, presents, friends.

We sing songs:
Puff the Magic Dragon, Twinkle Twinkle, Baa Baa
and her favourite -  alibali alibali bee
until she falls asleep sitting upright,
nestled against my body.
only then, with her peaceful, do i find my peace.
the morning comes

and there is no hesitancy;
 antibiotics come out,
all guns blazing:

even though it's probably viral,
even though she'll probably get better on her own,

even though it’s against my clinical acumen.
but there on my shoulder sits
dr respiratory and dr neuron,
the comedy duo,
nagging that early antibiotics are best...
the first spoon is given;
she smiles,
"banana medicine!"
and I wait with baited breath.