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
Closely 
and
Instinctively perhaps.
Yes,
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 
Peace.
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.

xxx






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

Different




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?"

"raspberries?"

"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,
cough, 
cough,
and then more
a good chesty, rib rattling cough
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.






Friday, November 30, 2012

My World is Small



Yesterday I realised how small my world is; the world that I live in with SMA...



So, let's recap the facts:


1 in 40 of us are carriers

2 carriers have a 25% chance of having a baby with SMA

Approximately 1000 babies are born each year with SMA, of any grade




and in the West of Scotland Eilidh is the only child to have been diagnosed with SMA grade 2 since her diagnosis over 2 years ago...  our world is small.  SMA is rare and my world, one living with SMA, feels ever so small, smaller than I realised.  

Yesterday I felt as if the walls were closing in on me and that all that is important at this moment in time is SMA and those with SMA.  I feel that I'm failing to see the bigger picture, but jeewhizz it's so god damn difficult to see past what is directly in front of me; SMA effects my child and feels all consuming at times.  I am angry: angry that I am part of this small world and questioning the purpose of SMA in my life and the life of my daughter and my family; angry that this has happened to us - what did we do to deserve this challenge in our lives?; and then, to top things off, I am angry for being angry for this feeling doesn't sit easily with me...

I know that this anger will pass - just as I wrote about grief here and how the stages of grief are far from chronological - and that life will continue and it will continue because there's nothing else for it; it simply has to.  And today I am reminded by  Trust Tending that this small world I live in with SMA (and special needs, too) is a wonderful world, full of children and families living with SMA (and other special needs) where love and support is abundant, where others stand beside me, holding my hand, hugging me at times, repeating over and over, "I am here.  I know what you are going through.  You are not alone...".  Thank you Kristin for this wonderful reminder today.












Thursday, November 29, 2012

Right Now...



My mind is buzzing
and my head is thumping:
too much caffeine,
too much thinking,
and now the girls are dancing to Halloween tunes full blast...
Is this the life I'm meant to be living?
Most definitely!
but right now I'd like to hit the pause button...










Wednesday, November 28, 2012

Home IS where your children are...

What is home to you?









I've wanted to share this song for a little while and today is the day to do so because I have just read a post about a woman I "met" through the world of special needs and social media.  So many of her dreams and hopes are in tatters as she moves into a new house; this year has been hard and yesterday she lost her home to the mortgage company, but despite this she seems (on the surface of her blog anyway) to see the positives and she is moving on.  She has realised (and I agree wholeheartedly!) that her children matter more than bricks and mortar, that her home is where her children are and I am so very confident that she will create a home, full of love, laughter and happiness, from the house that she moves to.  So to thea and nates mam, I am so very proud of you and wish you much love and happiness as you create new memories in your new home, wherever that may be. xxx





"'Cause they say home is where your heart is set in stone 
Where you go when you’re alone 
Is where you go to rest your bones 
It’s not just where you lay your head 
It's not just where you make your bed
As long as we’re together, does it matter where we go? 
Home... Home..."




PS... this amazing singer is the woman who sings "The Power of Love" for THE John Lewis Christmas advert






Tuesday, November 27, 2012

We are Fantastic!



We really don't know how wonderful we are, do we?
And yes, that includes YOU!
Yes, YOU over there, hiding in the corner...
xxx


Monday, November 26, 2012

A parent first


I recently told "Our Story" at the Scottish Muscle Network Conference.  I stood in front of approximately sixty people and bared my soul.  I shared stories from the last two years, stories that I felt told the story of our journey over the last two years: the point of diagnosis, the point when SMA came into our lives;  the importance of striving for my daughter's independence;  saying goodbye to our buggy days and suddenly becoming visible Eilidh; and, finally, her whizzy wheels and her beautiful independence, proving that a good life is so possible.  At the end of my talk I was asked three questions, the first was



"how do you cope being a parent 
to a child with special needs 
and a doctor, too?"


I replied that I know of parents who become professional parents, who work tirelessly for the “cause”, devoting their time and energy to promoting awareness, fund raising endlessly, sitting on committees and pushing forward policies and laws to protect their children.  I understand why these people devote themselves in such ways, I understand that they need to feel as if they are in control, that they are making a difference, because nothing can change the position that they are in currently, but perhaps their future, and the futures of others can be brighter.


In my mind I sometimes want to be a professional parent – I mean, full time and full on! A professional parent, champion of the “cause”! – but then I take a moment to think; I am a parent first and foremost, and then a professional. I want to devote my love and energy firstly to my family with my ideal being a home bursting full of love, fun and laughter.  I try to forget my medical training, leaving my clinical acumen at the front door, as easily as I hang up my stethoscope at work and put my handbag down as I arrive home.  I try not to second guess Eilidh when she is unwell, seeking medical advice when needed – although I have to admit that this is difficult and have been told off for not giving her antibiotics sooner when she starts to cough and splutter – “but she doesn’t have a fever and she’s happy in herself!”  I ask that the doctors and allied health care professionals expect nothing of me and my medical knowledge, explaining in layman’s terms, and then I’ll ask questions, more specific and medical, if I need to.








Three mornings a week, my medical training and clinical acumen are packed with my lunch, my stethoscope is in my handbag and I'm off to work.  As I say my "goodbyes" to D and the girls, my mind is saying "goodbye" to being a mummy and a carer for the day.  I walk into work and say my "good mornings!", assuming my role as a doctor as the meeting starts at 9am.  I listen, I support, I treat, I comfort, I teach and I manage. This is part of who I am, this is time for me and, I guess, a form of respite too (strange as it may seem...)  My job, difficult it is at times, helps me cope in my day-to-day, and my home life enables me to bring infinitely more to my job, too.


I’m not perfect though and sometimes my work bleeds into my home life, especially with so much continuing professional development required.  My on-call responsibility means that I am at work some weekends and called in overnight, too - N hates these calls, me leaving home when I should be with her, but thankfully, they aren't too often.  Then there are the days when home life becomes tough and no matter how I try I cannot leave my feelings at home and concentrate on my job: these are the days when paperwork comes in handy, when my colleagues provide a listening ear and a shoulder to cry on!  


So, how do I cope?
I cope;
I just do.
This is what is asked of me:
I cannot say that it is easy, but this is my life
and I take each day as it comes,
trying very, very hard to be
present in the moment
and grateful, too.





“Although I have several personae, I am one person, and my roles inevitably inform the other.  I am the kind of professional I am because I am a parent, and I am the kind of parent I am because I am a professional.  Through open-mindedness and constant awareness, I will strive to bring the best of each role to the other.”
Barbara Gill






Friday, November 23, 2012

Discrimination




“One way of undermining the dignity and autonomy of people who belong to a certain group is to target not them, but third persons who are closely associated with them and do not themselves belong to the group.”
Advocate General  Miguel Poiares Maduro





Over two years ago, and less than three months after SMA came into our lives, I decided to leave my job.  In the end it was an easy decision.  My colleagues made it easy.  In fact, they pushed me and by jove they pushed me hard.  

They lured me down to a meeting under false pretences.  D came with me for moral support but I felt save enough not to take him into the meeting because, after all this meeting wasn’t about me.

I was ambushed; for 40 minutes I sat in tears: the details of what was said aren’t important now, but their attitude and constant bombardment as they questioned my commitment and loyalty, pushing me for a return to work date (having been signed off with depression and anxiety prior to Eilidh's diagnosis), astounded me.

And then, the clanger, the moment I realised that this wasn’t the job for me, that these people were not who I wanted to work with, let alone be associated with:

“We don’t think that you can commit to this job with a disabled child...”

OH MY GOODNESS!
Oh, my goodness! 
Seriously? 
Did I just hear right?  
Did you really just say that?
Wow!
I don't know what to say;
I really don't know what to say...

I was shocked and stunned; I knew then and there that I couldn't work with such colleagues and so two years ago, more or less to this very day, I handed in my notice.

Although disability discrimination in the work place is often highlighted in the news and is an issue with which many HR managers are familiar, less widely publicised is the issue of discrimination on the basis of a dependent's disability.  Eilidh, because of her disability, is considered to have "protected characteristics" -you can find other such characteristics here - and this protects her from discrimination in a whole number of situations; but what you  might not know is that as a parent (or carer) to a child with "protected characteristics" you are also legally protected  under the Equality Act 2010 - it's called associative discrimination.


In the grand scheme of things, I knew that leaving my job wasn’t important to me, my family was (and are) everything and more, but the discrimination and lack of empathy shown by my colleagues shocked and hurt me.  After talking to friends, an employment lawyer was recommended to me.  I met him and he deemed that I could take my colleagues to tribunal, but  he paused and asked me whether I had the emotional energy and mental strength to take them on?  I knew that I didn’t.  In fact, in all honesty I never wanted to see them again... I felt that they had won and I was broken...

Having been diagnosed with PND after Eilidh and then suffering a huge setback in my mental health with her diagnosis with SMA – and my colleagues were very aware of this (and they probably, on reflection as I write this, used my mental illness as a weapon against me)  – I had very little energy or strength to push and take this further even though I knew I was in the right, that I was being discriminated against because of Eilidh, that I was, in fact being bullied.  My lawyer made me aware of the Equality Act 2010 which was due to come in only two months later, designed to protect those "associated" with someone with a "protected characteristic": the Equality Act, had in been in place when the comment was made, would have strengthened my case. I would have been protected as parent of a child with physical disability who had been discriminated against through association.

Had this Act been in place at the time of the meeting I would perhaps have considered taking them on, trying to prove a point to myself that I was better than them, but Eilidh was my main concern at that time and I had to focus on her and on my family - we didn't need Eilidh's diagnosis rubbed in our faces for it was still an open and raw wound.  And now?  I'm stronger.  I know that I am better than them.  So why am I here writing this post?  Perhaps as catharsis; perhaps I'm writing this to make others aware that associated discrimination does exists; or as a way of telling other parents and carers that they are not alone and that, if they have the strength to tell someone and do something about the discrimination they are experiencing; or maybe, just maybe, it's time to (oh, my goodness, I was about to type forgive - that is the word that popped into my mind... but I'm not sure that I am ready to forgive...) move on... yes, it's time to move on...







If you want to know one story of why - perhaps? - the Disability Discrimination Act 1995 was changed and the Equality Act 2010 was brought into force, please read the story of Sharon Coleman and her son (Coleman v Attridge Law).






Thursday, November 22, 2012

Comparison



ssshhhhhhhhhh...
can you keep a secret?
sorry, i know that i am whispering,
but i need to whisper...
i don't know if i can bare to admit this...
but it's eating me up inside.
can you hear me?
come closer...
can you hear me now?
you can?
then listen carefully and please, please, please don't tell a soul...
promise me that you won't tell a living soul...










there are engagements and weddings and babies galore
new beginnings,
ever radiant possibilities,
futures to grab hold of 
and live to the full
and i am happy for them
(i am...
I really am...)
but - 
and yes, there is a but -
inside i feel like crawling into a ball,
for i fear for my future.
our beginnings ended, 
our radiant possibilities waned,
our future stolen from us.
there are days when i feel that
joy will forever escape me,
no matter the smile i show the world.
and what makes it worse?
these new beginnings are for
my loved ones, close by
and so very palpable...
so, now do you see
why it was so hard to admit,
why i am whispering?
i love these people;
i wish them all i ever wished for myself:
love,
laughter
and
happiness
ever after.
and while i still have these,
i fear i have no joy,
only uncertainty,
and they have joy abundant,
or so it seems...





"Comparison is the thief of joy"
Theodore Roosevelt