Tuesday, November 18, 2014

Lives Worth Living



Her children were not suffering.
They were alive -
joyously alive;
disabled
but
alive
and living
each day with
SMA.

It is possible to live a 
joyous,
fun,
adventurous 
life
even with a 
disability.
My daughter has taught me so.

Those living with
disability
are human beings - 
eating,
smiling,
laughing,
loving and
enjoying life to
the fullest.

Those living with
disability
are
able,
beautiful
and intelligent
beings;
Their lives
no less
valid
than the next.

They are
living
their lives,
not
suffering.

I believe that we,
society as a whole, 
are 
responsible
for the death of those
children.
We, the general public,
as parents,
medical professionals,
allied health care professionals,
representatives of the media,
members of the government
are to blame.

We see and believe
that those less
fortunate than us -
those living with 
disability,
chronic illness,
physical and mental illness -
are not valid as 
human beings
in all that they do,
in all that they bring
to this world.

We see them as
invalid
and
suffering,
unable to contribute
to society, 
but, in fact, they do.
They so very

do!

She needed to believe that her children -
the children she had dreamt of, 
carried in her womb 
and borne to this earth -
imperfect as they were genetically -
were perfect.

She needed to believe that they were not suffering;
that life would become easier;
that her children would bring
joy to many;
that they would contribute to society in ways
unimaginable at the time of diagnosis;
that they would live independent lives - 
go to school, study at university, find a job;-
that they would find love and, one day perhaps, bear children.

She needed to believe that her
beautiful children had 
lives worth living and 
we failed her.
Society failed her.

She believed her children were
suffering -
and this is the true tragedy -
and that she was,
ultimately,
protecting them.

She believed that there was 
no
other option,
no way forward,
no happiness to be sought.

We failed her.

We could have shown her the truth - 
living with disability isn't the end.

We need to change the way we see those 
living with disabilities - they are our equals.

We need to treat them with respect -
the same respect we wish for ourselves.

We need to show compassion
because, in the future - today, tomorrow or thereafter -  we could be the one
living an unfamiliar life with disability.

If only she has known a better life was possible...




Monday, November 03, 2014

The Beauty of Brokenness



I need to believe this today.
I need to be reassured that here, in the midst of the daily struggle, 
something truly beautiful exists.
Broken perhaps,
but utterly beautiful always.











Wednesday, October 29, 2014

And still I rise...



I found a draft post tucked away on Blogger...

Things haven't been great over recent weeks, the fear of today and tomorrow overwhelming and consuming me. 

And today this post, reminding me that I have succeeded in picking myself up before and that this process gets easier with time.

Some friends stand by me still, keeping me afloat and new friends have joined them: even in their silence I know they are with me and that, for me, is the true meaning of friendship.




"... I know you are going to feel better... I remember very clearly the first time we met... (the) next time...I saw a very different person - soft and warm and silly and clever and sophisticated and deeply in love.  I said to (the duke of bedford) "she's cool - I'm going to try to be friends with her."  The third occasion which sticks in my mind is you and the newborn N.  You were peace and contentment and love personified - you made it look effortless and joyful - I began to realise your immense ability to care for others.  You and the two kids in the double Maclaren was even more impressive - laid back, laughing, delighted, full of amazing creative ideas.  The I remember the sheer shitting myself terror and tears of E's diagnosis - bloody hell you approached it with such honesty, took it like a full punch square in the face and I watched you pick yourself up after each hit, getting bloody and bruised but unbowed... You are a voice of reason and I value you and your friendship immensely.  There is more to you than meets the eye and what meets the eye is damn impressive..."




And still I rise...
Thank you, Duchess of Bedford, you are a true friend.
xx




Tuesday, October 28, 2014

Who is there for you?



Do you ever stop and think about the people in your life?
Your loved ones, your family and friends?
Past, present and future.

Who is there for you?
Who will grow old with you?
Who is forever immortalised?

Who is there for you?
Who has lasted  - and will last - the testimony of time?
Who became silent and distant?

Who is there for you?
Who can you run to when times are hard?
Who do you trust with your darkest secrets?

Who is there for you?
Who lifts you high in exaltation?
Who can you laugh, giggle and guffaw with?

Whoever is in your life, still there and present, reach out to them and tell them what they mean to you; explain to them what more they could be doing for you; ask what you can offer them; plan for some together time to talk and play; remember those no longer with you.

Take the time to be present with those in your life, you may need them more than you realise; just as they may need you.









"Who can I run to?
Who can I cry to?
Who can I trust with my life if I have to?
Who can I give love to if I need to?
Who, who? 

Colours are fading
All the lights gone dark
And it won’t stop raining
Everybody’s gone
And my joy is sad
Craving for love and happiness

Tell me who can I run to?
Who can I cry to?
Who can I trust with my life if I have to?
Who can I give love to if I need to?
Who, who? 

Time keeps flying away
Though it feels like my life is on hold
My love for you won’t change
I’ve pushed you away though I still need you close
And my joy is sad
Craving for love and happiness

Tell me who can I run to?
Who can I cry to?
Who can I trust with my life if I have to?
Who can I give love to if I need to?
Who, who?

Tell me who can I run to
When my world is upside down
Tell me who can I cry to
When there is no one around.

Tell me who can I run to?
Who can I cry to?
Who can I trust with my life if I have to?
Who can I give love to if I need to?
Who, who? "




Monday, October 27, 2014

Rolling



She found the roll -
Andrex puppy like -
and off she went,
free and exploring,
joyful in the every moment.
Side over side,
tangled up
and 
giggling.








This was perhaps - at least as I remember it - the penultimate day of normal infant movement for Eilidh.  Now, as I write, I wish so much that I had filmed it; that I could watch it over and over, remembering those moments when anything was possible.


We moved house, the commando crawling was there one day and gone the very next; that's how quickly SMA came into - and changed - Eilidh's life.  It's terrifying to think that this could happen to any seemingly healthy infant whose parents - unbeknown to them - both carry the SMA gene.  I can't help them at the time of diagnosis and in those days afterwards when their hearts are fractured (and I must admit that if I could, I would...) but I can tell them this: 

your child will bring you joy and happiness in abundance... 

and pray that they hold on to that hope.







I found this photo yesterday as I tidied up my desktop and couldn't help but share it with you after a family day of fabulous fun, joy and happiness abundant.



Friday, September 19, 2014

The Morning After








Let none wake despondent: one way
or another we have talked plainly,
tested ourselves, weighed up the sum
of our knowing, ta’en tent o scholars,
checked the balance sheet of risk and
fearlessness, of wisdom and of folly.

Was it about the powers we gain or how
we use them? We aim for more equality;
and for tomorrow to be more peaceful
than today; for fairness, opportunity,
the common weal; a hand stretched out
in ready hospitality.         

It’s those unseen things that bind us,
not flag or battle-weary turf or tartan.
There are dragons to slay whatever happens:
poverty, false pride, snobbery, sectarian
schisms still hovering. But there’s
nothing broken that’s not repairable.

We’re a citizenry of bonnie fighters,
a gathered folk; a culture that imparts,
inspires, demands a rare devotion,
no back-tracking; that each should work
and play our several parts to bring about
the best in Scotland, an open heart.



Christine Du Luca





Thursday, September 18, 2014

Changes ahead




“Whether you use your Heart,
Whether you use your Head,
Whatever the result,
We have changes ahead.”




photo and quote courtesy of Lost Haddington







Today's Tomorrow




driving through the borders



I am proud of who I am.
Proud of my identity.
Proud of my country.


The impartial expert opinions, the unbiased papers posted through letterboxes, and impassioned speeches - and more recently pleas - have been to aid the the decision we make today for tomorrow's future, fuelling this campaign for better or for worse.  


Today a close friend posted this - the only status I have read over recent times, having stepped away from social media to avoid the rising tension and, in some circumstances what I can only call bigotry and insolence - and I understand her.


"My 'No' Thanks friends are terrified this morning, worried that they could lose something great. My 'Yes' friends are all super excited, believing they might gain something great. Meanwhile life thunders on like a high speed train, so enjoy this last look out of your window at today. It will be gone in a flash. Whatever happens will be the only thing that could have happened."


I am terrified and excited but I have no doubts.
I believe in my principles and values.
I am confident:
I love my country.


Tomorrow, as we wake to a country where the voice of the people has been heard, life will carry on - for better or for worse and hopefully with a little less bigotry and insolence and a whole lot more unity amongst the people of Scotland.






Monday, July 21, 2014

Boosters and Beyond





To follow on from here - and the confusion regarding car seats, boosters and high-sided protection - comes a piece from BRITAX to steer us through the minefield of car safety and seats for our children.




BEYOND GROUP 1, WHAT NEXT?
Mark Bennett, Car Seat Safety Expert from BRITAX explains that as children move to a Group 2/3 stage car seat, safety whilst travelling should remain a key priority.



With many families setting off on journeys in the car this summer, it’s important to run a health check on your car seat to make sure it’s still the perfect fit for your child. This will ensure they are comfy and happy on their journey and you can rest assured that they are safe and secure whilst travelling.

It may feel that only yesterday you were buying your first car seat for your newborn and then just when you were getting to grips with Group 1, the next stage car seat will sneak up on you. Whilst your little one may appear to be a strong big boy or girl as they reach the age of four, keeping them safe whilst travelling is still top priority.

Mark Bennett explains, ‘Many parents are still unaware that it is required by law for children to travel in a car seat until they are 135cm tall or 12 years old - whichever comes first - so the final Group 2-3 stage car seats will see your child from the age of four all the way until they are 12 years of age.

At the age of four or 15 kg, children are old enough to move to a Group 2-3 seat with adult seat belt but this doesn't mean they don't need the same level of protection.  Many parents believe children will be safe on a booster cushion, a small platform that lifts them up on the seat, however these are not safe as they do not have the all important side impact protection of deep side wings and a protective headrest.

Mark Bennett has compiled some FAQ's to help parents understand the final Group 2-3 car seat stage and how to choose the seat that’s just right for you and your family.

Q. What is a booster cushion?  If they are sold why are they not safe?
At BRITAX, we're always striving to ensure that we offer the maximum protection for your children as they develop.  With recent research showing that side collisions are one of the most frequent and fatal types of crashes on the roads*, BRITAX decided to stop selling booster cushions.
Booster cushions are still sold because it is not required by current EU safety standards to conduct tests for side collisions, however if the regulations change, our experts do not believe that any new booster cushions would pass. 

Booster cushions are better than no car seat, however they offer no side impact protection. BRITAX recommend a BRITAX 'highback' booster, which offers deep protective side wings and head support. These work to absorb crash forces in the event of a collision whilst protecting the child's head.

Q. How do I know when my little one is ready to move to Group 2-3?
You should move your little one from a Group 1 to a Group 2-3 seat when they reach the weight limit of 18kg, or if their eye-line is higher than the seat's highest point - whichever comes first. This is usually at the age of four years.

Q. Can I buy an XP-PAD to add to my old Group 2-3 seat?
No. The XP-PAD is integrated into the KIDFIX XP SICT.

Q.  What actually is the current law when it comes to car seat safety for 4 + year olds?
It is required by law for children to travel in a car seat until they are 135cm tall or approximately 12 years old whichever comes first.

Q. How do you fit a Group 2-3 car seat?
A Group 2-3 car seat can be fitted by ISOFIT, where the child safety seat is attached to the vehicle body with connectors in the same way as ISOFIX.  It is classified as ISOFIT rather than ISOFIX as the child is secured by means of the adult 3-point seatbelt. ISOFIX is a term used in Group 0+/1 where the child is secured by means of a five point harness, and the car seat is fitted to the ISOFIX connections points.

Q. How do I know which is the best Group 2-3 seat for my family?
Every family is unique and has different considerations and practicalities to consider when choosing a seat. To help simplify the process, BRITAX has created a unique online tool that assists a parent to identify the right seat for their child and their car. For each seat, Fit FinderTMwill also inform the users what seat positions are approved in the vehicle and the appropriate fitting method. You can view the latest Fit FinderTM here http://www.BRITAX.co.uk/car-seats/fit-finder.




Saturday, July 05, 2014

"Bin the Booster" with BRITAX




You may be aware of my previous posts on car seats and car safety, all of which stem from my friends being in a horrific car accident - luckily they all survived, but in an instant their lives changed beyond recognition.  Today I want to tell you about a new campaign "Bin the Booster" which is relevant to all mummys and daddys with children between 15-36kg.

From Monday BRITAX has teamed up with leading parenting advice programme, Emma’s Diary, to run a week long campaign dedicated to getting out and about with children safely this summer. The week will help further educate parents about safety in Group 2-3 and will include tips on giving your car seat a health check and what to look out for when purchasing a new Group 2-3 seat. The campaign, which will run from Monday 7th July, will also include a live Q&A on the Emma’s Diary Facebook Page with BRITAX safety expert, Mark Bennett, who will be on hand to answer any questions parents may have on the topic.







BRITAX URGES PARENTS TO BIN THE BOOSTER AND TRAVEL SAFELY THIS SUMMER
BRITAX partners with Emma’s Diary to advise parents about the benefits of high-backed boosters in Group 2-3

This week, leading child safety brand, BRITAX, has launched a nationwide initiative designed to educate parents about car seat safety in Group 2-3 and to highlight the dangers of using booster cushions with older children. The ‘Bin the Booster’ campaign urges parents to opt for high-backed boosters with side impact protection to ensure little ones are safe and secure on their travels in the lead up to summer and beyond.

The current law says that children must travel in a car seat until they are 135cm tall or approximately 12 years old, whichever comes first. With this in mind, many parents opt for a simple booster cushion to help lift their child and ensure the car seat belt sits across them at the right angle. However, BRITAX found that approximately half (49%) of seat belts used to secure child seats may be fitted incorrectly*. They are often twisted, too high, or fitted around the seat and not the child.

Booster cushions also do not offer children any side impact or head protection, which is why BRITAX now only sells high-back boosters, which offer deep protective side wings and head support. Despite this, booster cushions are still sold because it is not required by current EU safety standards to conduct tests for side collisions, even though around 1 in 4 (25%) car accidents are from a side impact crash**. However, if the regulations change to include side impact testing, BRITAX experts do not believe that any new booster cushion would pass. 

Recent research from consumer champions, Which?, reveals that 55% of 4-12 year olds are using a backless booster seat when travelling in a car and that 22%*** believe they offer the same protection as a high-backed booster seat. Like BRITAX, Which? experts recognise that this simply isn’t the case and so have also urged parents to switch their booster cushions for a high-backed option in a bid to keep children as safe as they can be whilst on the road.

Product developers at BRITAX design their products to provide protection during traffic collisions from every angle of impact. This protection includes deep side wings, head support and a v-shaped backrest which grows with the child to ensure comfort and security at all times. These are all safety features evident on BRITAX’s latest KIDFIX XP SICT car seat, which has set new safety standards within the industry with its energy absorbing seat belt pad, the XP PAD, and new adjustable side impact cushion technology (SICT) for superior side impact protection. Also, to ensure the seat is perfectly in place every time, the XP range also uses ISOFIT technology to connect directly and rigidly to the ISOFIX fittings in the car.
cid:image001.jpg@01CF922A.190874A0
BRITAX products surpass legal safety requirements and set high safety standards in the international market – and the company is not alone in its belief that booster cushions are not the safest option for children. 

For more information on BRITAX’s range of Group 2-3 seats, visit http://www.BRITAX.co.uk/car-seats/award-winning-highback-boosters/award-winning-highback-boosters-home



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