Friday, March 29, 2013

something to consider...



I have been asked to consider something - a position of responsibility - but I'm not sure that I am the right person for the job.
I could list a hundred reasons not to take on the role
but I could pin a thousand quotes that appeal to me, that talk to me of moving forward, of taking a leap of faith, that are full of encouragement and positivity.
What is the right answer?
I don't know.
Is this not, ultimately, what I set out to achieve?
Perhaps.
So why am I afraid of failing?
I'm not sure...





"The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you"
 
Mitch Albom



 

Wednesday, March 20, 2013

When does a carrot cost a carat?









When does a carrot cost a carat?
When it's a carseat!
Boom Boom!

(oh, how I loved Basil Brush!)

No, this is no joke...
Unbelievable but true.
A carrot - no, not the vegetable! - at the bargain price of (somewhere in the region of) £1800!
Attach "special needs" to a product required by law to keep our children safe in the car and you have a licence to print money.

No one could advise us on car seats for E.
Not physiotherapy
Not occupational therapy.
Not wheelchair services.
Not even our specialist neuromuscular physio.
(and you won't be surprised that social work didn't have an answer either!)
Apparently in the neuromuscular world it's a problem unique to SMA (presumably because of the young age at diagnosis?)

You might ask why we don't transport her in Snappie?
Good question...
It's safer at this age, and while we are able to transfer her, for her to travel in a car seat.
Ok, seems simple enough, yes?
Now to find a car seat that offers a little more support and adaptability than the run of the mill seat.
Not a difficult ask, one might think.
Well you would think wrong!
Coupled with the fact that no one could advise us on options available or even where to look, we stumbled blindly around the internet until I remembered that we had seen a company at Naidex a couple of years ago; now, what was there name again?
 
So, after some searching, a rep from JCM Seating came to visit and showed us a single option, The Carrot.  It seemed quite cumbersome on first inspection but overall seemed very supportive and, perhaps most importantly,  E appeared comfortable in it.  There are modular options available to increase the seat depth and height of the chair (allowing for a good amount of growth - up to 160cm) and accessories like a table which would provide additional support should E want to read or draw on a long car journey.  Available in three colours, E was quick to choose red and then came the discussion of money:
 
"With the accessories you would need, you're looking at about £1600."
 
Well, I nearly fell off my seat: £1600 for a piece of equipment required by law which provides more support with children with special requirements, low muscle tone and poor core stability? The manufacturers (or distributors?) must be - surely - taking the Michael!
 
Our quote (£1800 and so pounds...) came through in December but we haven't taken it further yet and purchased one.  This car seat will need to be funded privately and by Jove, it's a wad of cash!  What we need to do is find a charity willing to support an application for funding; in the meantime, E continues to grow (out of her current seat) so I should get a move on, pull my finger out and source some funding to ensure that she is safe and comfortable while riding in the E-Mobile.
 
 
 
 

Rumination

 
 
To ruminate: to turn a matter over in your mind, repeatedly, casually and slowly, pondering thoughtfully, self-reflecting, over-thinking, focusing and analysing past experiences and current predicaments, brooding on what could have been, what is, what could be...
 
There are nights when I wake and quickly my brain hits top gear, speeding away from me, keeping me from sleep.  Tonight is such a night...
 
Eilidh cries out;
I go to her,
I turn her.
"stay, mummy, stay..."
I sit for a while next to her,
until her breathing settles.
My mind however begins to stir:
 
"sleep;I am so tired;endless nights,each one blurring into the next,sleepless;I am exhausted,how am I functioning? am I functioning?;a night away would be great -oh! we've just had one...well another night away would be good; yes, some respite.respite, is that a possibility?officially I mean?not just my mum...we don't offer respite at work; work...yes...I need to change my working hours but is that even possible? I wish that I didn't have to work  at all-perhaps the guilt would ease;another chest infection-not that she has that many-I felt so guilty sending her to nursery-they didn't even do her breathing exercises-"there wasn't enough time..."WTF! you are gambling with my child's health- MY child's health...actually perhaps I'm the one gambling with her health;work-perhaps I should give up work? no,I can't,we need the money;we need a holiday,a break away from routine,some fun-where should we go? abroad? perhaps not,there's snappie to consider-she and planes don't mix well...what about an accessible holiday cottage? omgoodness! our house isn't even completely accessible  must get onto social work again about ramp access;hoists, when are the people coming from moving and handling? stupid suspended ceiling-we are going to have to rejig that ceiling to put in tracking;why,oh why isn't life more simple? I thought that being an adult would be easier-well easier than being a teenager anyway-crikey the joke is on me...;I NEED sleep-please let me sleep -PLEASE..."
 
 
And so it continues until I stop, until I find distraction, until I find the switch that I can flick to turn my active brain off













There are two distinct classes of what are called thoughts: those that we produce in ourselves by reflection and the act of thinking, and those that bolt into the mind of their own accord
Thomas Paine


I think of my ruminations as a way of reflecting on my life, but now I can see that the over thinking and over-analysing can be negative too, appearing "like a bolt into (my) mind of their own accord", never finding answers and keeping me awake at night.  Before I am even aware, an hour may pass and as the dawn approaches I find a million reasons not to go back to bed.  Not only does the sleeplessness have a negative impact on my mood and day-t0-day, but apparently ruminating raises cortisol levels, impacting on my physical health too (in too many ways to even contemplate here).  So as the dawn chorus begins here, I begin to ponder:
 
"mindfulness-yes, I must find out about where I can go and learn to be more mindful-the Buddhist centre I think-in the centre of town;oh,i need to organise my trial of make-up for the wedding too; I must buy my outfit for the hen-will D be ok with the girls that weekend? perhaps I'll get.."
 
Stop!
Wait a minute...
Yes, I must be more mindful...
 
 
 
 

Monday, March 18, 2013

Brilliance in Blogging

NOMINATE YOUR FAVORITE BLOGS


 
 
 
Do you know that 1 in approximately 50 of us carries the gene for Spinal Muscular Atrophy (SMA). 


Approximately one million people in the UK are SMA carriers (about one in 50 people).

Approximately one in 20,000 babies is affected with severe SMA and dies before they reach a year of age.

 
Just now there are between 5500 and 6000 people living with spinal muscular atrophy in the UK. 

 
Type II is the most common form of SMA and the form that my daughter has.




Spinal Muscular Atrophy (SMA) is a genetic disorder that affects nerve cells so that muscles can't be used and become wasted, or atrophied.  SMA affects the nerves in an area of the spinal cord called the anterior horn. The nerve cells become damaged, breaking the link between the brain and the muscles. As a result, the muscles can't be used and waste away; the weakness is progressive as the child grows.  This can lead to problems with breathing as well motor activities such as crawling, walking, feeding and head control.


SMA is a genetic disease and types I, II and III are autosomal recessive conditions meaning that if both parents are carriers, there is a 1 in 4 chance of their child having the disease.

 
Startlingly, after cystic fibrosis, (SMA) is the second most common lethal autosomal recessive disease in Caucasians and yet very few know of SMA.  Over the last few years many have started to raise awareness, some talking publicly of their grief on losing their baby to SMA and others fundraising to give their children the best chance at early mobility.  The word is spreading via Social Media; British Mums and Dads are paving the way for their children and those not yet born.


You could be affected, just as my family has been.  The  cold hard facts are here but they don't tell you much about living with SMA as each child born with the disease is different, each family coping with a disabled child in their own way. 
 
 
I write here not just to spread awareness of SMA but also to tell you of the normal life possible when living with a disabled child.  I am appealing to you to nominate Touch and Tickle not because I think that I am one of the top blogs in the parenting blogsphere but rather that I want to shout out about SMA...

 
The government are looking at pre-natal screening for SMA, there is more research into treatments happening around the world, but few people have heard of SMA into recently; I want to help change that. 

 
Why do I want to be nominated? So that SMA can be recognised and that women can be informed of the potential risk of SMA when planning a pregnancy.  It really is that simple -  I want to spread the word; I want SMA to be known of in every household because 1 in 50 of us are carriers: can you help me to spread the word?

 
If you can Tweet SMA, Facebook SMA, go viral with SMA and take a minute and nominate Touch and Tickle: give SMA the hearing it deserves.


Thank you for visiting today; if I have achieved one thing, it is that you now know that SMA exists.




If you would like to nominate Touch and Tickle, you can find the nominations form here.


Nominations are open from today until the 12th April.  The blogs with the most nominations will go through to a final phase of voting sometime after then before the BiB Awards in June.  Touch and Tickle made it to the final 20 last year; can you help take Touch and Tickle all the way to the Awards this time?

 
 
 
 
 
 

Friday, March 15, 2013

Rhinowhat?



"it's obvious, you silly, stupid girl!
 it's a good going case of rhinophyma, if I ever did see one" said the doctor
"Rhinowhat?" she asked, bewildered and moderately embarrassed.
while shaking his head in disbelief, he hollered at her,
"rhinophyma, you imbecile!"









A large, bulbous, ruddy nose, of course!
 
Happy Red Nose Day!
 
 
 
 

Thursday, March 14, 2013

Jumping Clay!




On Monday we were lucky enough to welcome Meabh and Jumping Clay to No.21 for some crafty clay fun. And woof! did we have fun!






 

Jumping Clay is an amazing product.  It's water based, non-toxic and mess free - perfect! As the girls started to pull and roll and squeeze I could smell jasmine - a therapeutic oil often used to reduce stress and enduce a sense of calm - and the clay also has antimicrobial properties - silver nano - to combat bugs and bogeys.  So an all-round innovative and unique product perfect for use with kiddies, children with special needs and the elderly too.  It so happens that Meabh works with a group of children with autism and in a care home; Jumping Clay can help with tactile sensory sensitivity and manual dexterity, proving the overall usefulness of this amazing product.









So the girls pulled and rolled and squeezed, forming billy balls and daisy drops,  and mixing colours (Meabh "do you know what colours make pink?" and Eilidh replied "yes! yellow and blue and purple!") all with the aim of making a wee model dog like the one above.  Meabh was gentle and patient and very encouraging, especially when Eilidh would say that she couldn't do something - with encouragement, she so clearly could!
 
























We all asked questions and at one point Meabh said "I'm a Jumping Clay expert; there isn't much about Jumping Clay that I don't know!" and she's right - good thing too as she is planning to open the first Jumping Clay Academy in Scotland, right here in Glasgow!  Whoopeeeeee!

By the end of the hour, four gorgeously cute dogs sat on the table, the red one is Niamh's and the white one Eilidh's - pretty fabulous, aren't they?  The girls were so pleased with what the achieved and perhaps me more so with what Eilidh had managed pretty much on her own.  I asked the girls what they would give their Jumping Clay Day out of 10:

"20/10" shouted Niamh
And what did you enjoy most?
"EVERYTHING!"
 
Meabh, looks like Jumping Clay is a resounding success here at No. 21!  Thank you for a wonderful afternoon.


 





 
 
 
 
Pretty cute, aren't they?  And they don't need potty trained either...
 
 
 
 
 


I was approached by Meabh who offered Eilidh & Niamh a free trial session to demonstrate the usability and flexibility of Jumping Clay for little ones and those with muscle weakness.  In return I have written this post to highlight what a fantastic product it is and to promote Jumping Clay Scotland.  Honestly, I would have shouted out from the rooftops even if I had had to pay; it was a great afternoon spent with a lovely lady who is working hard to promote her new business and we are right behind her in wishing her every success.





Friday, March 08, 2013

Ascension Respite

 
 
 
 




Today we dreamt of far away places, the warmth of the sun upon our souls and the luxury of gin cocktails flowing through our bodies: anything to get away from the day-to-day realities and flaws of mankind.  Far from the storms and rain that threaten our shelter - but which we learn to dance in regardless - we will find our sanctuary...

From turbulent weather to the most stable of climates, where sunshine reigns upon those who live there: they cannot stay forever though, for nothing remains the same.  When their life's work is done, their role complete, they must move on, unable to stay in their homely haven; it must be hard to leave such perpetual bliss and return to the island of ennui.  How we would ache for our Ascension days.





Ascension Island is real: the sun, the stable climate and the need to leave, too.  I listened to Simon Mayo on Radio 2 a few weeks ago; it had been a bad day at work and he was talking about the warmer climes of this remote island located roughly halfway between the horn of South America and Africa.  It sounded like heaven and the perfect place for some respite...
 
 
 
 

Thursday, March 07, 2013

My Grandfather

 
 
I never met my grandfather and my dad knew him only for a short time before he died.  He was a baker and confectioner, working at Jenners before starting his own bakery and tearoom in Haddington.
 
Decades after his death, I remember weekends at my grannie's, breakfasting with tearoom china and silver toast racks - she made breakfast feel so special and decadent.
 
I think that his baking legacy continues on; my baking days will never be over - it's so therapeutic! - and Eilidh just loves cake too much!  But I so wish that I had had the chance to meet him, that I had shared stories of the tearoom days with my grannie. 
 
And now, I dream of lazy, decadent breakfasts with my children and cakes - glorious and divine cakes! - for they are part of whom I am.
 
 
 






Wednesday, March 06, 2013

M74 South

 
 
a perfect sunday:
a journey south to visit friends:
the road monotonous
but the scenery ever changing.
 
 
 
 
 
 
 
grey clouds, mustard yellows,
olive greens and winter heathers:
the symbiosis of wind blown energy
and electrical conduction ever-present.
 
 
 
 

 
 
weekends are often too short:
looked forward to and  ideally spent
with loved ones, family and friends -
together, memories old and new.







arrival at the water's edge
near Caerlaverock;
the comfort of friends
and a sense of peace.







outside, a sound;
skeins overhead and all around,
remind me of my childhood home
as the geese leave this winter Firth.