Friday, June 27, 2014

Tears and Foolishness

I often "pause for thought" just before work - a moment of reflection to start the day. Sometimes a piece resonates deeply and the following blessing did just that; it gives me permssion to be angry; to cry tears of rage, frustration and hurt;  and, every once in a while, to be silly and headstrong and foolish. On hearing these words, my very existence - my role in this world - was confirmed... and off to work I went.  

A Franciscan Blessing

May God bless you with discomfort
At easy answers, half truths, and superficial relationships,
So that you may live deep within your heart.

May God bless you with anger
At injustice, oppression, and exploitation of people,
So that you may work for justice, freedom, and peace.

May God bless you with tears
To shed for those who suffer pain, rejection, hunger, and war,
So that you may reach out your hand to comfort them and to turn their pain to joy.

And may God bless you with enough foolishness
To believe that you can make a difference in the world,
So that you can do what others claim cannot be done,
To bring justice and kindness to all our children and the poor.

Sister Ruth Fox

Thursday, June 26, 2014

A Carer?

Last week was Carer's Week, which - if you weren't already aware - follows closely behind volunteer's week.. This is rather ironic really as every day 6,000 people take on a caring responsibility and for most it's not a voluntary job...

I am a mummy; I have a career; I am a carer, too.
And you know what?
It is so very hard to be all three.

I was once asked why I considered myself a carer: surely looking after Eilidh is part of being her mummy?  Why differentiate between my role as her mummy and being her career?  And today I could ask myself the same question...

Surely a carer is someone outwith the family who comes in to care, to provide a role and do their job; all in Eilidh's best interests?  As a doctor that's what I once thought.  A package of care organised for my patients on discharge when they were no longer able to care for themselves, when their families could no longer burden the responsibility.  A carer: a person, an anonymous individual paid to provide a service.

What happened?  SMA happened.  And with SMA came the reality of my child; a little girl with a physical disability who depended on me, who needed all cares attended to.  At the point of diagnosis I was Eilidh's mummy, pure and simple.  By the age of three the lines were blurring: the toll of sleepless nights, Eilidh searching for her halcyon position, turning, turning, turning; the constant awareness of her dependence on me, her need to be moved, positioned, lifted.  By the start of school I realised, although definitely first and foremost (and with eternal gratitude) her mummy, I was also her carer.  A role I had not chosen, nor took to willingly.

I was at school, standing at the gate waiting for the bell to ring, when I realised just how dependent on others Eilidh is, how different she is from her peers.  The bell rang and there she was, with twenty-nine other five year olds, her pupil support assistant by her side, Snappie carrying her forward.  Eilidh stood apart from her peers.

Not long after, the tracking hoist arrived.  I wanted to pick her up, cuddle her close, smell her beauty and innocence but my body resisted, crying out in frustration as my muscles tightened and bones ached.  The hoist was necessary but I felt removed from her, distanced as she would hang cradled in her sling, removed from human touch.

Over time fewer and fewer people - friends and family - could or would lift Eilidh up, unsure of how to lift her, protecting themselves, and her too, from injury.  With that our fortnightly "date nights" and our weekends away, became more infrequent; time with my husband now seems to pale into insignificance.

Eilidh stands apart from her peers and is so very dependent on us, her parents.   I became a carer the moment I realised this.  It was never a hat (or a job) I wished to wear but, none the less, it is now a permanent fixture and it sits heavily upon my head - even now, four years on.  With the start of the summer holidays here, this hat will be worn more often which is rather daunting.  There are no holidays clubs suitable for nor able to include Eilidh and with the local authority granting us a mere six hours of self-directed support a month (yes! a month!!), D and I are using annual leave and two weeks of unpaid parental leave to provide the extra childcare.

So, to the people who question my role of carer: it's complicated but it's true; I am Eilidh's mummy but I'm also here carer too. 

When I wrote this post, imagining me in my carer hat, I remembered back to BritMums Live 2013 and my favourite talk of the weekend - Story of Mum and Pippa.  Thank you for inspiring me, Pippa and making me smile with your ever changing hats.

Monday, June 09, 2014

The Ticket I'm Appealing

To Parking attendant no:02484 and UKPC

This WAV, registered to Motability with obvious rear tail end lift and "Please leave a 3m gap!" sticker was indeed parked in a disabled bay on 23rd May at 13:03.  

The blue badge that my daughter has was on the dashboard, although not "clearly displayed".  It not being "clearly displayed" was, yes, an error but I, unlike many hundreds of other vehicles throughout the UK, was parked with due and legitimate reason in a disabled bay.  The only thing I had not done was display the blue badge clearly as I was in a rush to take my 5 year old disabled daughter to the toilet and did not pause for a second to ensure it was standing on the dash rather than lying down.  

As you can see from our blue badge it in fact expired in February - we had not realised this until looking at it for the purpose of this appeal.  We are now in the process of applying for a new one - easily done as my daughter qualifies for higher mobility rate until 2021.

So, to parking attendant No:02484, I apologise for being in a rush but couldn't you just have looked at the WAV and used your common sense, choosing to turn a blind eye on this one occasion?   Now I realise that my daughter's blue badge has expired but so what?  She has a life limiting disease which leaves her wheelchair dependent and dependent on others; this is never going to change, her blue badge is for life. 

I have missed the initial 14 day period; this fine now stands at (a ridiculous!) £80 instead of £45 - life has been busy juggling being a mum and a carer, and working too.  My daughter needs a new car seat, which we have to self-fund; so the money that I am not paying towards this ticket - because, quite frankly I am enraged by the whole situation! - is going to her new car seat. If that is a problem for you, then please consider pursuing this claim further.

Many Thanks

Angry, frazzled mummy