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



Wednesday, November 07, 2012

Hope



"hope sees the invisible, feels the intangible and achieves the impossible"
Helen Keller













Once born of the earth,
grounded
and
steadfast
and 
strong,
my hope
was
doubtless 
and 
unquestioned.
But then
hope was lost: 
there I was
bobbing up 
and 
down 
on the ocean vast,
disappearing
below the surface,
from time to time,
drowning in
sorrow.
There was 
nothing 
to hold on to;
nothing
visible
or
real 
or
tangible.
I was lost
without
hope.
But
a lifebelt was
thrown, 
invisible but
ever present,
a comfort and aid:
hope
was its name.
Now
buoyant with hope
I can see the
stars
bright
and beautiful
and ever hopeful.
hope,
a guiding light 
through the
darkness,
and although
it may 
wax and wane,
it will catch me once more
and return me to the
earth,
never to 
leave me
adrift 
and
alone
again.






A little abstract perhaps but inspired none the less by Di who posted about the ever changing face of hope at Hopeful Parents and Katie who wrote a beautiful post about hope here, reminding me that hope is so many things: these two remarkable friends fill me with hope and are a constant reminder to (in the words of Obama): 


"have the courage to keep reaching, 
to keep working, to keep fighting".






Monday, November 05, 2012

A Toddler's Independence


This is a post originally posted on Whizzy Wheels earlier this year but I wanted to share it here because there have been some developments recently...



"I wrote a letter in January to a man; he is the head of services at the local wheelchair services and rehabilitation centre.  In essence I was asking him to meet Eilidh and help us maintain her independence, but core to this letter was also my want to allow others in a similar situation to gain their whizzy wheels quickly so that they could be as mobile as possible at an early age:

"Eilidh has a neuromuscular condition which does not affect her intellect or her cognition. Eilidh is like many other children with SMA and other neuromuscular conditions and can use equipment that some disabled wheelchair users may not be able to use and at an early age when they would naturally be becoming mobile. Mobility is an extremely important element in not only the physical development of a toddler and child, but also in terms of their language and social development: we strongly believe that Eilidh’s speech and language improved as a result of her becoming independent in her Micro. Early mobility will promote self-exploration, motor learning, visuo-spatial awareness, social development, confidence and cognition. Children with progressive neuromuscular weakness will benefit from energy efficient light weight wheelchairs at an early age and I ask that you consider seeing children diagnosed with spinal muscular atrophy grade 2 or 3 early to enable them to become mobile as early as possible."

The next month I had an appointment with our OT at the centre and head of services joined us, with Eilidh as our smiling mediator:
Almost defensively, I ask "I hope that you don't think that I'm being a bolshy parent?" and what i heard in reply surprised me, "No, I agree with you".

Wow!  the head of services agrees!

And so we talked about Eilidh and her experiences with her Panthera Micro - oh, how she rocked that chair! -  and now her Bambino.  We talked of her Action3 Junior and how it really wasn't suitable for her to use and maintain her independence because it was too heavy and cumbersome.  He told me that I had done a good job - too good! - because they would be unable to source a lighter chair for Eilidh, but they could look at the Action3 Junior and see if they could adapt that.

By then the most important part of the conversation was about providing lightweight self-propelling chairs for newly diagnosed SMA children.  We talked of the cost of the chair - which he didn't think was unreasonable as it is comparable to the cost of an adult chair - and I suggested perhaps having a bank of them as they could be reconditioned and reused.  He agreed but did state that parents  are often very reluctant to use reconditioned equipment for their children - surely it would be better to have your child exploring their environment early than worrying about the newness of the equipment?  We talked of the small number of children in Scotland with neuromuscular conditions which would mean that the initial outlay for panthera chairs would be costly - but what cost can you put on a child's independence?  Not wanting to be beaten by cost, I suggested a Scotland wide bank of chairs and he said that it would be something that the wheelchair services could certainly consider and he would discuss it further with the other centres.


With the adult chat out of the way, Eilidh was able to show off her cheeky, stubborn, independent streak and we all walked out to reception to say our goodbyes...


I might not have realised improved independence for my daughter, but hopefully - fingers and toes crossed - wheelchair services will seriously consider providing newly diagnosed children with lightweight manual chairs to toddle and explore with.  I just need to go and chase him now for his written reply..."


He hasn't written but watch this space...
I'll be back directly!



Sunday, November 04, 2012

The Hummingbird








As part of the run up to the truly fabulous Create:Eat evening, we - the backers - were asked seven questions, including our name and what we do for a living, to enable Hannah to design a crest for us.



What do you LOVE to do?
be true to my values

Where is your place of origin?                                                   edinburgh

What is the centre of your world?                                               my family

If you were an animal, which one would you be?                        
a hummingbird

Tell us something that most people don't know about you.
(and now some more people know!)
i love the smell of summer rain and cut grass



So the crest above is all mine and you know what?
I love my crest. 
Why? 
Because of the hummingbird and the gentle rain that falls upon her...


I wasn't sure about what animal I would be, but I had received a card from mrs bring me sunshine months before which read: 


"the hummingbird - a bird of astonishing force and grace. A bit like yourself..."  


So I chose to be a hummingbird.  And then, just as I was coming down from the high that was the Create:Eat experience, a package arrived from sweetpea: a card from Papyrus enclosed inside, a gold hummingbird sealing the envelope and hand written words - 


"legends say that hummingbirds float free of time, celebrating our hopes for love, joy and celebration.  the hummingbird's delicate grace reminds us that life is rich, beauty is everywhere, every personal connection has meaning and that laughter is life's sweetest creation"


I chose to be a hummingbird then and I would choose to be one again, on a daily basis, reminding me over and over that life is so very precious.  So, thank you mrs bring me sunshine for bringing the hummingbird to me.  Thank you sweetpea for the sweetest words I have ever read.  And thank you hannah - the creative genius that you are-  for a crest that truly means everything to me.