Thursday, August 30, 2012

Do us proud!

With distinction and honour, I know that you will do us proud.

Over 11 days, 300 of you will compete, going for gold, silver or bronze, doing your very best because you are living a good life, a full life and a life full of purpose.

You will inspire a nation, of that I am sure. 

And I know that you will inspire me to live life fully with SMA, encouraging E to see her ability and not her disabilty, for life is what we make it.

Wednesday, August 29, 2012

Celebrating the Flame

On Sunday we donned waterproofs and attended a Flame Celebration Family Day at the Tramway and Hidden Gardens to celebrate one of the main aims of the Paralympic Torch Relay - "to celebrate the spirit of human endeavour – to make everyone believe that anyone can do anything". 
The flame has been lit four times, each in a different UK capital city, each being lit by the energy of physical endeavour, uniting only at the opening of the Paralympics tonight.  We were privileged to see the flame from Edinburgh pass through Glasgow and the Tramway was buzzing with whizzy wheels, families, song and dance; there was an energy to the event that was palpable.
We watched dancers from Indepen-dance dance with umbrellas and beach balls, in beat with their own rhythm, following a journey through  the simple pleasures of the weather There was a simple beauty to the choreography and I felt humbled watching the troop enjoying their moment.
Wandering further into the Hidden Gardens (one of my favourite places to relax), we made keepsakes of the day from "flowers of meaning" to press between books, drying them to remind of us of the celebrations. 

Each flower had a meaning:
fennel for worthy of all praise and strength
salvia for energy and wisdom
carnations for health
alstroemeria for aspiration and friendship
nasturium for patriotism.
The man on the stall made sure that E had fennel in her keepsake to "give her strength"

The girls wove flowers into a stunning garland of celebration and well wishes to loved ones and paralympians alike:
sunflowers for patriotism
roses for unity, grace, and charming simplicity.
It was lovely to feel part of the good spirit by adding our flowers.


A collage workshop was held to draw inspiration from the Flame, creating a banner of colourful flames, ribbons and sequins - N & E, always keen to get stuck in to crafty things, loved being able to contribute to something larger than their individual pieces:

It was a wonderful afternoon and a great celebration of the spirit of the Paralympic Games but the event was marred slightly by being held in a venue accessible once inside but with no disabled parking bays and not easily accessible by public transport (although visitors are encouraged to use public transport!).  It is hoped that London 2012 Paralympics will change people's perception of disability; it's just a shame that the perception of some of the event planners wasn't altered prior to this celebration of the flame in Glasgow.

Why I blog...

Long before the Olympics this was my song du jour.
It spoke to me, encouraging me forward, to blog and talk openly about my life and life with SMA,  to share my "version of events", hoping to inspire and hearten others that life with a child with a physical disability is worthwhile.  It encourages me to try and spread awareness of SMA and to be in contact with others within the SMA, neuromuscular disorder and special needs communities exclaiming that "there's no need to be afraid, i will sing with you my friend", you are not alone.
There are times when I don't feel as though I am doing enough, when I don't have enough energy to fulfil my ideas, when I don't have enough time to dedicate to spreading the word, when I don't have anything to give, but I reassuringly know - although I sometimes need reminding and that is where this song comes in - that I am sharing my "version of events" and that sometimes that is enough. 
This is why I blog...

"You've got the words to change a nation
but you're biting your tongue
You've spent a life time stuck in silence
afraid you'll say something wrong
If no one ever hears it how we gonna learn your song?
So come, on come on
Come on, come on
You've got a heart as loud as lions
So why let your voice be tamed?
Baby we're a little different
there's no need to be ashamed
You've got the light to fight the shadows
so stop hiding it away
Come on, Come on

I wanna sing, I wanna shout
I wanna scream till the words dry out

so put it in all of the papers,
i'm not afraid
they can read all about it
read all about it oh

At night we're waking up the neighbours
while we sing away the blues

making sure that we remember yeah
cause we all matter too
if the truth has been forbidden
then we're breaking all the rules
so come on, come on
come on, come on,
lets get the tv and the radio
to play our tune again
its 'bout time we got some airplay of our version of events

there's no need to be afraid
i will sing with you my friend
Come on, come on
I wanna sing, I wanna shout
I wanna scream till the words dry out
so put it in all of the papers,
i'm not afraid
they can read all about it
read all about it oh

Yeah we're all wonderful, wonderful people
so when did we all get so fearful?
Now we're finally finding our voices
so take a chance, come help me sing this
Yeah we're all wonderful, wonderful people
so when did we all get so fearful?
and now we're finally finding our voices
so take a chance, come help me sing this

I wanna sing, I wanna shout
I wanna scream till the words dry out
so put it in all of the papers,
i'm not afraid
they can read all about it
read all about it oh

I wanna sing, I wanna shout
I wanna scream till the words dry out
so put it in all of the papers,
i'm not afraid
they can read all about it
read all about it oh"

Monday, August 20, 2012

My Gentle Slumber

Sleep, or the lack of,  features frequently:
here and here and here and here
and on Saturday night
and last night too...

A memo on my phone
19th august

"I want to run
and hide
and sleep.
I want to hide
in the
slumber of the night
but it
alludes me
and I am
scared that,
sacred and precious
and necessary as it is,
ebbs and wanes and slips away,
gently with the night,
leaving me
and scared that
I cannot cope without her."

I am left alone with my thoughts and instead of hiding from them in my gentle slumber, they circle round and round and round in my head: questioning me; giving me space to worry about the present and the future (but never the past); making me doubt myself, my choices, my decisions.

Some may find solace in alcohol or drugs or food or exercise, I find it in the hours of night while my brains stills and sleeps.  I need to find that peace.  I need to find my gentle slumber.  I need to sleep.

Friday, August 17, 2012

Koala Days

"A Diary Day Reflection - 11th August 2010

So today is going to be tough;yes sireee, no doubt about it...

There is no getting away from is: there is nothing and no one to hide behind.

SMA will head us square between the eyes, but I guess that today is another day on our journey to acceptance.

Permobil are coming today to demonstrate a couple of (power) chairs - the K450 and the Koala (I bet there is nothing cute, cuddly or even docile about this piece of equipment...).  A stranger will enter into our home, where I should feel safe and secure, with an object which confirms the reality that Eilidh has SMA, that she is unable to walk, and that she is wheelchair dependent.

I know that I have to think positively - somehow! - about today.  Today is a positive day, a positive step.  We are reaching out for Eilidh and her independence.  Her mobility and escape from learned helplessness - as she is unable to explore her environment - is paramount.  She needs to feel challenged and stimulated.  She needs to move forwards - and backwards - and round and round and round and round in her whizzy wheels. She needs to be a toddler.

Today is a small step into our future and our journey with SMA..."

It was a small step and we were brave, but that step brought as closer to today and I am grateful for the independence Eilidh now has.  It might not be a Permobil but they helped us find Snappie.

35 years on

Elvis is in the house!

35 years after his death, he still has the ability to make people smile and this certainly had me grinning from ear to ear yesterday when I heard it for the first time.  Laughter is infectious, laugh and smile a while today...

Tuesday, August 14, 2012

Blazer Days

There, in the wardrobe, beside the floral dresses, hangs a blue blazer; it looks conspicuous but tomorrow will blend easily with many others.  The coloured socks in the drawer are replaced by white and navy cousins; the blue and gold tie and hairbands are ready to be adorned; the patent mary-janes lie ready and waiting to skip and dance and hop-scotch; and the purple flowery school bag - so very N! - is packed and waiting for the excitement that lies ahead.  Tomorrow my little girl starts school; her care free days are changing, the world opening up in front of her and she is ready and so, so very excited...

The school has a motto

virtus scientia decus
virtue knowledge and honour 

the latin - obviously! - adding  "gravitas" to this motto and many a saying that can provide us with a moral compass as we grow and learn.  Profound and ever lasting, mottos can build people - my school motto was impendo - distribute cheerfully (through charitable giving or happiness of heart or both?), but it is in the every day that our children learn, whether at home or in school, unconsciously broadening knowledge and experience: life builds the adults of the future from the children we create - how amazing is that?

mira quaedum in cognoscendo suavitas et delectatio
there is a certain wonderful sweetness and delight in gaining knowledge

I believe so;
let's hope that N does too.
Happy school days, N; they truly are the best days of your life!

Monday, August 13, 2012

Our Children

The Graduation Medley was brilliant - thank you, Rufus! - and I often catch myself singing along with N now, some weeks later, smiling at the lyrics, laughing at how N misquotes them.  The songs and lyrics remind me - on the eve of N's school career - that I am not neccessarily the keeper of my children but instead I help raise them to know that they are of unique heart and mind, safe in the knowledge that they are deeply loved.  My children are no different from others;  children need roots to grow and wings to fly (and a good song or two to belt out with great gusto and confidence, even though they may be just a little out of tune...)

"With a cool, cool breeze and dirty knees
I rest on childhood memories
We all got old at breakneck speed
Slow it down, go easy on me, go easy on me

Put a wetsuit on, come on, come on
Grow your hair out long, come on, come
Put a T-shirt on
Do me wrong, do me wrong, do me wrong"

"You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be."

"What would you do if I sang out of tune,
Would you stand up and walk out on me.
Lend me your ears and I'll sing you a song,
And I'll try not to sing out of key.
Oh I get by with a little help from my friends,
Mmm,I get high with a little help from my friends,
Mmm, I'm gonna try with a little help from my friends.

Do you need anybody?
I need somebody to love.
Could it be anybody?
I want somebody to love."

we are young
So lets set the world on fire
We can burn brighter
Than the sun"

Wednesday, August 01, 2012

how a friend can help

How can you help?
Yes, YOU!
This is for the 6.4 million carers and for the special needs mums who have lost their voices:
For their family and friends,
And for those who want to help.

I need you;
I need your "normal".
Please reach out to me
and invite me
and include me
And under no circumstance
take "no" for an answer.

I might seem fine on the surface -
that's often how I get through my day -
but that's not always the case.
If you care for me,
if you love me,
insist on helping;
I find it hard to ask for help 
and will struggle to accept it,
so insist
and don't take "no" for an answer.

we need you and your "normality".
please reach out to my family:
accept us
and include us -
Snappy and all -
and be there for us,
helping us to be "us".

So dear friend, how can you help? 
Have I given you an idea?
Never take "no" for an answer,  
never believe “I’m fine”,
accept us as we are,
include us in your life
and always be sincere.