Thursday, February 28, 2013

Rare Disease Day 2013







There are approximately 7000 rare diseases
350 million people are affected worldwide -
75% are children;
30% of them will not see their 5th birthday
 
 
 

Spinal Muscular Atrophy is but one of these rare diseases: Joubert's is another.  I thought that our world was small but when we stand together Eilidh and Finn are not alone; Katie and I are not alone and together there is a whole lot of hope because, worldwide we have a huge voice and we should be shouting loudly and proudly!













 
 
 
 
 
 
 

Wednesday, February 27, 2013

The £29.24 Challenge




 
 
I don't remember much these days but one fact from the Muscular Dystrophy Campaign Conference 2012 has stayed very much in the forefront of my mind;  it's amazingly simple:

  
"If every family affected by muscular dystrophy or a related neuromuscular condition raised £29.24 this year we would meet the fundraising requirement set for Scotland’s contribution to fund our research work and support services."  

 

WOW!  
 
Isn't that amazing - £29.24 can make a difference to someone living with a neuromuscular disease.
 
 
So here I am blogging and begging  - I won't jump out of a plane but I will beg, borrow and steal! - for your help, for you to Make Today Count
 
 
I ask you - my family and friends and everyone who loves Eilidh-  to donate £2.92, £29.24 or even £292.40(!) to  the Muscular Dystrophy Campaign for those living with neuromuscular disease in Scotland.
 
 
Family and friends by means of six degrees of separation can you pass this challenge on, sharing on Facebook and Twitter #2924challenge to #maketodaycount?
 
 
Will you take up the challenge for Eilidh and for others living with neuromuscular disease?
 
 
To go to The £29.24 Challenge JustGiving Web page follow this link:
 
 
 
 
 

Sunday, February 24, 2013

The Black Keys

 
 
David discovered them before the Brits;
I thought it was a mid-life crisis,
39+1 and all...
 
 
 
 
 
but the more I listened,
the more I enjoyed
the blues-rock
from ohio
 
 
 
 
and when they won,
I got in the van,
turned on the sound system
 
 
 
 
 
 
and felt so young
and current
and alive
and I began to wonder:
why an earth isn't our van on their home page?
 
 
 
 
 
 
 
 
 






Thursday, February 21, 2013

"he is on our side... he is on our side..."

Searching for images for my last post I found this positive graphic: this is want I hope for for our social work services - in an utopian society and ideal world - but limited by resources, bound by policies and procedures, spirits dampened by difficult cases and difficult lives, many do not seem to have a lot to give.










 image from bcasw





if only this were the case: that the lives of the majority were strengthened and enriched





As a nation we often do not see our social workers in a positive light.  We see them first and foremost as gatekeepers for the Government, thwarting our attempts at living life to the fullest.  Many are attempting to make a (genuine?) difference - perhaps not with the enthusiasm that signalled social work as their career path, perhaps not with the energy that brought them to this vocation and perhaps not with the innocence and naivety that told them that they could change the world - but they are trying and they - apparently! - can make a difference.
Social workers work for the individual, not for the Government and although paid by the local authority, not for them either; they work holistically for Eilidh and (hopefully!) our family, and they work for individuals like Eilidh, and for their families and carers, too .  "They help individuals, families, groups and communities to realize their potential and assist people to enjoy full, active and creative lives. They work to create social and environmental conditions to enhance quality of life and to develop the full potential of each individual, group and community in society."   (or at least they do in British Columbia... :) )
So, with this in mind, I will meet with Eilidh's social worker today to hand over the letter and documents explaining the extent of Eilidh's physical disability and the level of support she requires as a result, repeating mantra-like over and over "remember, he is trying to help you; he is on your side"...  Well, at least I'll try to; I am after all trying to be positive and keep an open mind...

dear mr social worker


Dear mr social worker
 
Further to our recent meeting I would like to clarify a few points.
 
Firstly that the role that you and Social Work are to play.   You commented that “we support the child, we don’t support the family” but we believe that this is not the case, quoting directly from the East Renfrewshire Council web page:  “We provide assessment of need and on-going support to families affected by substance misuse, mental health, children affected by disability, families experiencing problems due to separation and loss and with children experiencing difficulties with trauma or behavioural problems”.  Given that we are currently undertaking an assessment of need and we do not know the outcome of this, we hope that it becomes clear that we as a family are indeed in need of support: The Children’s Act of 1989 states that in the case of a child with special needs that the family will be assessed as a whole unit.  Therefore, in conjunction with the assessment of need, we ask for a family assessment and or a carer’s assessment to be undertaken.
 
Secondly your statement that Eilidh “has few needs over her peers at this age, but that this will change over time”.  We also disagree with this: Eilidh is in receipt of the highest rate of DLA which in itself tells us that her needs are significantly more than her peers.  I have included a copy of the completed DLA application form for you to review which gives in detail the level of input that Eilidh requires now.  I hope that the level of care Eilidh requires will become apparent to you and subsequently will be reflected in our assessment rather than a dismissive generic remark regarding a child you do not know, with a disability you have only some awareness of.
 
Lastly, we were disappointed to hear that in many families living with children with special needs, one parent may indeed need to give up working to care for their child, relying on benefits to supplement their family income.  It would be naive to imagine that this isn’t the case for some, but I would hope that with more support - emotional, psychosocial and physical - that fewer parents would feel that they needed to give up working.  Of course, the issue of resources - and lack thereof - would be cited as a reason not to be able to provide such support but with millions being put into benefits, and with the Welfare Reform Bill only reducing these benefits, therefore impacting on people’s quality of lives, surely more time, energy and money should be put into providing support to keep parents in employment, enabling and empowering them to live as a family more independently?  That said, it is our hope that we can both remain in employment to the benefit of all our family but look for support in doing this.
 
We look forward to working together in the assessment of our needs and investigating the role and benefit of Direct Payments for individual care for Eilidh, with the ultimate and common goal of supporting our family as a whole unit.
 
Yours sincerely
h0pefulmummy
a mummy looking for hope for us and many more like us
 
 
 
 
 
 

Monday, February 18, 2013

Rules of Road(trip)

 
 
the first rule of road(trip)?
there are no rules...
just mystery,
adventure
and
damn fine food.
 
 
 

the #roadtrip menu
photo by the beautiful duchess of camptoun
 
 
 
date: valentine's day
venue: freemans
company: d, mr tweed and the duchess of camptoun
 
 
 
 
 
Taste buds truly tantalised and teased, shouting in awe of Indian spice, Scottish fayre & the wizardry of McTSingh's pop-up #roadtrip extravaganza: oh, what a  culinary delight!
 
Every ingredient and dish described by McTSingh's daughter - and we have to thank her for making us smile and spreading sheer joy - and each course eagerly awaited and greedily devoured.



The sambar with it's spicy, sweet and sour pork belly had quite a kick; what a way to start!
The goat pattys were simple and tasty but the carrot/onion/tamarind salad was zingy and crunchy and just quite amazing.
The black salt corn really rocked my boat - tequila on the cob with a hint of - for me - Rotorua for hiding in the black salt was a wicked sulphur buzz...
Dem Bones (dem bones) - soft, succulent spiced salmon, and encouraged to break the bones and suck the marrow from within - delicious! 
Two helpings of mutton and chickpea - a biryani style dish so deep in flavour that you couldn't help but ask "please, sir, can we have some more?".
And onto dessert and vermicelli and pear with clean flavours; a lovely way to draw a close to a memorable foodie experience.
 
 
 
oh my, oh my!
 
McTSingh, aka Tony Singh, your culinary talent and wizardry shines bright!
We had a fabulous night at the #roadtrip and feel privileged to have been able to attend.
 
A big thank you to Aoife and Carol from Jelly & Gin for setting the wheels in motion and to David from Freemans for hosting (silently!)  McTSingh's  madness.
 
 
Pop-up dining, I'll be back!
(oh please let there be another event soon...)
 
 
 
 
 
 
 
 
 
 

Sunday, February 17, 2013

The Whindust Route

 
 
Sometimes you need to feel the air rushing past, the sun shining upon you and the sheer joy as your daughter delights in some mamma-me time...
 
 
 
 
 
 
Today was such a day.  N & I took to the open road to explore the relatively new park being developed near where we live.  The Dams to Darnley Country Park hosts seven miles of tracks for all to explore.
 
 

 
 
 
We chose the whindust route which follows the southern shores of Balgray reservoir:  with many a place to pause, there was ample opportunity to enjoy the scenery and bird life which reflects the ever changing seasons of the year.




 
 
 
We sat and chatted and raced and laughed and giggled and enjoyed our time together.  We promised to do more; to spend more time together, just the two of us, having and delighting in our mamma-me time.  And now, as I type, I promise, wholeheartedly to see my glass child shine brightly much more often than I do.
 
 
 
 
 
 
 
 
 

Tuesday, February 05, 2013

Reading



Why do we read?


"We need to know we are not alone"
C.S.Lewis



Each one of us will take something different from the words and chapters of the books that we read: we will see characters in different lights, we will imagine far off places and lands, experiencing different worlds and moments, dreaming of - perhaps - a life less ordinary.







my book choice is, as you can see, rather eclectic, but then, isn't life?





"No two persons ever read the same book."
Edmund Wilson





Why do we read?
I read to escape...


Over the last few weeks and months I have left the moment and very much lost myself within the pages of many a book.  I have devoured the written word, finding escape in other worlds, other stories, other people's - fictional and non-fictional - lives.  I have found peace and quiet, far from my world, far from the trials and tribulations of the day to day.  Lost in the words and sentences, I stop thinking about my life: I stop running; I stop moving and juggling; I stop worrying and ruminating; I find rest and restoration; I lose myself.  I don't know where I would be without books - right now they keep me company during the wee small hours when I struggle to find sleep and they cease the ruminations that run wild.  I am grateful that I can read and I am grateful for the books I read.








Monday, February 04, 2013

From Milport to Marakopa



Have you ever thought of running?
When I say running, I mean running away?
From everything?
From real life?

I used to run away to the other side of the world,
to peace and quiet and anonymity,
away from friends and family
and towards adventure
with weightless baggage
and no discernible guidebook.

As soon as I boarded the plane
I would feel
the
freedom.





pinterest





In far off lands
I would stand back from life
and take stock,
reflecting upon what I was running from.
Invariably, in time, I would find myself again,
lost amongst my thoughts
and return home to those I love, to places familiar, to my life.


I cannot not run now,
there is so much to leave behind.
I wonder when the option was lost?
At the start of a relationship?
With the joining of a marriage?
With the arrival of a child?
When three became four on the birth of second child?
Or when life became the life unexpected?
In reality, the moment blurs;
Commitment has made me face
real life and the
everyday rollercoaster of
marriage and children,
with the added
discombobulation
which hit with destructive force
in recent years.

I am stronger -
there is no doubting this -
and yet I still have moments,
days and even weeks
when I do want to run;
when I want to leave this
life unexpected,
to start afresh
where ever I need to go.
From Milport to Marakopa
or anywhere in between...

So,
Who's coming with me?