The beginning of the end

Standard
The beginning of the end

Two things today made me cry.

The first caught me off guard and as much as I tried to swallow them away, to inconspicuously wipe the first few tears as they pricked the corners of my eyes they fell. Making me feel small, uncertain and very vulnerable.

I failed and the emotion of the moment got the better of me and the tears over spilled in front of a consultant, a physio, a nurse and the school OT..awkward!

I am often referred to as strong, determined and a bit feisty. I will try my utmost to keep my emotions at bay and usually they come out as strong worded emails that I can hide behind and control. Not today.

I was told that one thing that needs to be done as part of transition and to ensure Z has a voice in his medical care is a bit of paperwork which includes an emergency health care plan. This is a plan that is to be put in place to direct the medical staff if an emergency was to take place with Z. How far would we want them to go with treatment etc.

Well obviously as far as they possibly can because why wouldn’t they?

The enormity of the meaning of this plan and how it could change over time brought the tears and I felt totally overwhelmed by it all. I know it will need to be done and I know why it was mentioned but my head is not ready to deal with those tasks and my heart broke a little bit more.

I have dealt with the same services for a number of years. I have a good relationship with most of them but the cocoon of those services is about to be torn apart and we are not ready to come out of it. These are services that have, in general, protected, provided and supported the needs of one of the most precious people in my life and now their job is to move him on. That would be great if there was something to move on to but I feel we are about to be cruelly ripped out of the cocoon and thrown into the long grass.

This is Transition! I have heard other parents talk about their experiences and now its our turn.

It seems only yesterday we were starting the process of Z accessing children’s services, only yesterday that we began the journey of navigating support and getting all the referrals to the people that can help him get the best life possible, getting his statement, getting him known to the children with disabilities team, accessing amazing physio support and getting the house adapted. It wasn’t yesterday though! It has been almost 15 years!

Transition is looming and I am just not ready.

fav rainbow quoteThe second thing that made me cry was my 4 year old singing ‘Somewhere over the rainbow to me.’ Its our little song after all she is my little rainbow. I usually have to sing it to her but today she wanted to sing to me.

Her innocence and her sweet little voice singing about dreams coming true and troubles melting like lemon drops.

Someday I’ll wish upon a star, and wake up where the clouds are far behind me
Where troubles melt like lemon drops, away above the chimney tops
That’s where you’ll find me

If happy little bluebirds fly above the rainbow why oh why cant I….

Advertisements

Collective collabaration .. the road ahead 

Standard
Collective collabaration .. the road ahead 

Last Friday I attended a workshop organised by Duchenne UK, DMD Pathfinders and the Duchenne Hub. The workshop was to discuss how we can develop trials for adults in Duchenne.

Primarily I left encouraged.

  • Encouraged that we are now having conversations about trials in the adult population ( I think ) I’m not sure if everyone in the room embraced the word adult or if when the word adult is used they are actually meaning non ambulant. Currently there is only 1 trial that is for adult age the rest cut off at 16-18. That is not adult.
  • Encouraged because there are some real discussions taking place around outcomes and end points other than the 6 minute walk test. One of the slides was entitled ‘outcomes for grownups.’  The PUL (performance of upper limb) is now becoming a recognised standardised tool in clinical trials.  I’m sure there is further work to be done on tools to include adults and those with very limited upper body strength. There is definitely some work to be done still around measuring quality of life outcomes.
  • But most of all it was encouraging to see in one room representatives from health, research, pharma, patients and patient organisations

For the first time I felt there was a real desire for collaboration between industry, patient organisations,  health and research. That is testament to the hard work of Duchenne UK.

We have moved on from blaming to moving forward.

It’s been about two years since the emotionally charged meeting at the Centre for Life where patient organisations and researchers met in the midst of a crisis situation.

Clinical trials were being turned away as centres were at capacity. This situation had come about, I think, because of lack of foresight, collaboration and lack of funding.

Out of that meeting The DMD Hub was formed and Work began and now the situation is changing. In just two years we have more trial sites and more clinical trials taking place.

True Collaboration works!

Now we are faced with another challenge. Getting trials and treatments to the whole of the DMD population.

It’s a huge task! However we have the starting blocks.

  • We have standards of care that are now recognised for adults
  • We have conversations taking place
  • We have recognition from all sectors that this is needed.
  • And I think we have commitment … time will tell on that one.

Why is it so important ?

One day these children that we have invested in so heavily, in terms of research, care and trials they are going grow up. The majority will reach 18, 25 and possibly even 30!

They are going to be the next generation of adults. These children who can take advantage of trials now will need to be followed and monitored and we have to ensure we have the infrastructure to do that.

The drugs we have now are slowing the decline but they are not stopping it.

Better access to standards of care, better treatments , better heart and respiratory care isn’t going to ease the burden on our clinical infrastructure it’s going to increase it. The Duchenne adult population will increase as our children grow up and live longer. So more than ever we need to look at the bigger picture. Let’s not be so short sighted we create another crisis.

For example I was shocked to hear that one of the biggest hospitals in Scotland doesn’t have access to a hoist for dexa scans. We can start by getting the clinic infrastructure prepared.

I hope that yesterday was the start of something truly ground breaking. I am confident that Duchenne UK will hold every biotech and every researcher to account and we will further the opportunities for all with Duchenne.

As a side note : Catch 22

The first approved treatment for Duchenne took 18 years! I was listening to the representative from PTC who thoroughly depressed me with his presentation. He was proud of being the only biotech to have an approved treatment but as he went on to explain it took 18 years!

We don’t have 18 years to sort this for the adults with Duchenne.  I think we all know that by now.

When asked a question around ensuring access for adults on trials he said they are in a catch 22 situation. They have to design effective trials to meet endpoints to get approval or no one gets the drug. He said it’s about give and take. I still can not decide whether that was an insensitive or just a brutally honest answer.  However it was said to an adult patient and from what I understand there’s not been any giving or taking from the adult Duchenne population.  They don’t have the opportunities to give to research and they certainly haven’t been able to take from research.

We need industry and the regulators to really think outside their small 4-12 years old ambulant boxes.

We need to get ourselves out of this catch 22. Until we can find the magic bullet, which stops the disease in its tracks, we have got to remember that all these children will become adults and will need better access to treatment and care than there is currently.

We’ve got a long road ahead of us in this journey but finally it’s a journey that’s begun.

 

Let’s not be afraid to make the paths where currently there are none, ensuring that those to come next can follow in these brave new steps.

Step by step let’s do everything we can collectively to ensure no one is left behind.

Is a poo in privacy too much to ask? (that is the posh title)

Standard
Is a poo in privacy too much to ask? (that is the posh title)

‘Personalisation will mean looking at health services in an entirely different way. Staff will need to understand and embrace the idea of personalisation and shift from an attitude of ‘doing to’ the service user towards one more about ‘doing with’’ SCIE

Friday .. my long awaited day off. That’s irony right there!

Packed all 3 kids off to school had a coffee and then set off on a 37 minute journey (according to Google) up the coast to visit a potential shortbreak provision for Z.

I say potential, it is the only one open to him within the county. We don’t have choice and control in this backwater of a county. Let’s ignore the fact that there are 3 other provisions a 25 minute drive away but they are across council divides and so we can not possibly send him out of county and how dare I even suggest that!  We also ‘don’t do personal budgets’ in this county either so God forbid I ask for the equivalent funding to go and purchase from a neighbouring council.images

No exaggeration I have actually been told on numerous occasions that Northumberland does not do Personal Budgets for children.

Anyway you can see the kind of mindset I was in having to drive further up North to look at a provision which I was already 99.9% sure would not be suitable for Z’s needs but social care have determined it can meet his needs so obviously I am wrong. I am only his mum what do I know….

I kept telling myself as I drove up in the pouring rain, be open minded do not live up to your difficult parent label. Smile sweetly, go through the motions then you have ticked the box and can move on to the next stage in the fight (yes fight) to get what Z needs.images (1)

You see if I don’t go up and look how do I know it is not suitable and how can I argue that? Well I already know it is not by looking at photos of the provision and reading eligibility criteria of the provision. But because I have nothing better to do than prove this… 

So I was welcomed in by the manager of the provision, she was fantastic, she explained how the provision was led by the young people. No set menus, no set activities but led by the group in at the time. Big bonus points right there.

She asked me to give her some information on Z and information from me as his mum rather than reading a file. I nearly had to ask her to repeat that as I thought I had misheard. She had just scored major bonus points with that question. At work I always tell parents to start with information on their child as a child not their needs.

So I began to give her some information on my son, his humour, his questions, his stubbornness and his fierce independence. I could see her facial expressions change when I told her he goes off to the shop on the corner with his cash card and comes back with food. It was clear that she was questioning this referral and if this provision was the best place for Z. She also thought it was great that he did this. I sat there wishing that this was a suitable provision as I had respect for this manager running it. (see I don’t hate everyone)

Anyway we had some further discussions about his needs and what would be required to support him there and she showed me around. It’s a lovely provision, very homely and inviting. But as I had already seen on their website no ceiling track hoist and only one electric bed. Individual bathrooms with baths and a small roll-in shower cubicle placed in the room with the toilet cubicles. No shower chair, we would need to bring his own and no specific disabled toilet. She did tell me there was a wet room downstairs they can access but I got the impression she didn’t think that would help facilitate his inclusion or independence.

As I looked my heart sunk, and broke a little more as is often the case in these situations. I thought to myself  Z’s social worker and her team manager have said this is a suitable provision! What Fricking hope do we have!!

All my Duchenne parent friends reading this are probably horrified. I won’t go into the details but imagine if you wanted to ‘go’ in the morning and the only way to do that was with the cubicle door wide open!! 

We then went to the dining room, again a lovely room. I looked at the table, and this is where my expertise as ‘just his mum’ comes in, as I could see he wouldn’t get to the table to eat as his wheelchair would not fit under it and he would not be able to prop up his elbows on the table to be able to eat independently.

I explained all of these things to her and I think she was on the verge of giving me a hug!

This provision wasn’t set up for children/young people with physical disabilities it is specifically for those with severe/mild learning disabilities. My impression is they are adapting as they go due to the demands in service but also hampered by lack of funding. She hasn’t even met Z but you could tell she wanted the best setting for him even if that wasn’t her setting.

So to recap as I am rambling and ramble when I am annoyed.

The shortbreak provision that my social work team have deemed suitable and have named in the assessment  would mean :

A 40 minute plus trip up the A1 on a friday night (nightmare)

The main entrance is stairs he would need an alternative which there is but I actually didn’t see the lift

Use a mobile hoist something he isnt used to yet

Sit and go with the cubicle door open with no wash/dry facility (that right there at 16 is a big no.)

Not be able to eat independently

Not be able to shower unless we can get a shower chair there so that would mean two 40 minute trips up and down to take his up there. We can not fit Zak and the shower chair in the car at the same time. (Funny social work degree won’t teach you things like that)

Mobile phones are discouraged and advised to hand into the office overnight – although I think Zak would have been allowed his if I had pushed it.

Potentially not have any peers that would communicate with him on his level

But this is the suitable provision that will meet the need for Zak to start to build independence and to give us some overnight respite from the 3-4 wake up calls through the night.

So I chatted to the manager a bit longer and then I think between us we came to a decision that this wasn’t a suitable provision. I thanked her for her time. (I really did like her we need more of her type)

I made my way back home to try and salvage what was left of my day off.

I have ticked the box, I have not dug my heels in and I have been open to what the social work team have put forward but how frustrating is it when you have the conversation and you tell them that the provision isn’t set up for wheelchair users.  ‘But they are Mrs R we have children who use wheelchairs there, there is a lift.’

Do we really think in this day and age that a lift is the be all and end all of an accessible provision.

But because my 16 years of being his mum and my last 2 years of supporting Z through the awful transition of physical independence to physical dependence counts for nothing then I am not listened to. I am difficult and just overly anxious or have unrealistic expectations – sorry but if the fact I expect my son to be able to have a shit in peace and privacy and be able to feed himself when he still can, well if that is difficult and if that is having high expectations well yes, yes that is most definitely me !!

If this is choice and control, if this personalisation, if this is social care then you can shove that plan where the sun does not shine!

Why can’t we get this right? Personalisation as been on the agenda for almost 10 years, why are

a focus on outcomes not services. a positive approach to risk.service users still having to fight against those who hold the purse strings and those who write the assessmements. Why do we still have professionals in the field who do not get the whole ethos of personalisation. I was somewhere the other day and was horrified to hear some of the opinions people in health and social care have when offering packages of care

PersonalisationWhy are we still not looking towards to outcomes for individuals and only looking at need. And why are we still trying to fit every disabled person/child into the same round hole. It does not work!!

Parents are labeled as difficult if they ask for alternatives no we are not difficult we are proactive and have to be that way because the system is not.

Do you really think I have the energy to be a difficult parent for the sake of it? NO! I am raising three children one with a genetic condition and two that are girls (say no more) one is hormonal and the other is just a crazy 4 year old. I am working more or less full time I do not want to be wasting time petrol and energy on ticking your stupid boxes and fighting against the system.

I spent the 37 minutes back home partly on the phone to my husband whinging about what a waste of a trip that was and how I was right all along bla bla bla and the other part of the drive devising the email to the social worker and team manager.

What do you think?

Dear XXXXX

Thank you for the opportunity to explore the shortbreaks provision that you have deemed to be suitable for Z  to meet the needs that you have assessed.

I have visited today and although a lovely provision knowing Zak and his needs I do not feel this would meet his current needs.

He likes to poo in peace, he likes to eat at a table and he likes a shower, none of which he can do at the provision.

Would you like to now refer to the provision I originally suggested months ago

I am concerned that if this is not addressed soon that the Local authority could be seen to not be meeting the assessed needs of my family which is written down in his plan.

Alternatively you could give us the equivalent as a personal budget (I can explain exactly what that is if you like)  I thought  we could manage the budget and then purchase weekends away for Z with a PA. He could visit different places go and out and have fun! This would meet all the outcomes as well as catering for his needs and ours and of course I would keep receipts. 

I look forward to hearing from you.

PS I hope the local SEND inspection has not been too traumatic for the local authority. 😉

Then as I pressed send the whole house blew up and the whole of Northumberland CC IT systems came crashing down as a mere parent suggested trying to take control of the social care purse strings and have some choice and control for her sons support ….

Creativity is a swear word up these parts.

Logging off as a  very fed up, disgruntled, frustrated parent #difficultparent

But a parent none the less and a Mum who will fight for her son to have that choice and control.. Now do I go for a run or have a gin 😉

IMG_9133

 

Enough of the Cheese

Standard

I hate this time of year – I love Christmas but after the last present has been unwrapped, the last bit of Christmas dinner eaten or fried up I am done with it.

Because what comes after boxing day is just days of limbo waiting for the turning of the new year and I hate that part even more.

I like order, I like tidiness and I can’t do unpredictable or uncontrollable and those few days of ‘crimbo limbo’ just make me anxious, down and insular.

I have to force myself up and out, My Mum will be surprised to read that I actually don’t indulge too much in the alcohol or chocolates as I know if I start I wouldn’t stop and then come New Year I will be berating myself for the extra pounds put on.

During the lead up to Christmas I am busy, busy shopping, planning and ensuring that we all have an amazing Christmas one to remember, another memory for the box. When you have a child who, one day, you know you will face Christmas without you try and make the most of every moment. Capture every smile, every laughter, every present swap just so when they are gone you have something tangible to look at and hold. Memories – because one day that is all I will have.

This year however I had to take a step back from the camera, over the last year I have learnt alot about being present, being there in the moment instead of looking on from a view point years down the line and trying my hardest to capture it to box it up. So after a few token surprise face photos I put down the camera and I looked through my eyes instead of a lens and I saw firsthand the smiles, the laughter, the present swaps and as I saw each one with my own eyes I stored them deep in my heart. I buried the fear of a Christmas without him deep deep down and enjoyed the Christmas with him. (as well as with the rest of them obviously)

But then come these days, these days where they all blend into one, where you get fed up of turkey, cheese and crackers and the thought of another mince pie makes you wretch. The days where seasonally they are dark, cold and wet and all you want to do is stay indoors, in bed and hide away. Or maybe that really is just me?  I know that in a couple of days time New Years Eve will hit and I will have to plaster a smile and pretend to celebrate another turn of the year and make plans for 2018.

I can no longer make plans – look too far ahead because the future scares the absolute shit out of me. There have been so many changes in the last year what can happen next year? Plus on top of all that I am turning 40 in 2018 and let’s face that alone is depressing.

But back to today, the kids argued all day, the weather was crap, all I saw on social media feeds were kids having fun sledging, building snowmen and pretty pictures of snow. We had rain! Awful heavy rain and it stayed dark most of the day. I stayed in bed for as long as I possibly could then when the guilt of doing nothing got to much I got up and had a shower. I then remembered that actually it’s ok to feel like this, maybe in some strange way it is normal, like some sort of Christmas comedown. My only way back up was to write off today accept the feelings and practice some self care and self love. So I put some music on, put a face mask on and then played mousetrap with the kids. They still fought like cat and dog (or should that be cat and mouse) but we managed to get through three games relatively unscathed, Then after more cheese, crackers and pate I retreated to bed accompanied by violet gin, my thoughts and this blog, whilst my amazing husband watched Harry Potter with the girls and Z went on his new game. Which incidentally I can hear blaring out of his room!

There have been days like today before and there will be days like today again. On this journey sometimes it feels like  I stop  under a very dark cloud and you know what that is ok. What is not ok is to make it home and to settle there.

Fearne Cotton, in her new book Happy, refers to the Pendulum therapeutic tool

‘We all feel scared of getting too happy, as its often sidelined by the fear of that moment ceasing to exist. Fall into good times feeling safe, but knowing of course that it will have a natural end. The same with the darker times. All this too shall pass. If, like me, ‘blue’ or ‘black’ is one of your go to states, let it come and pass naturally. Don’t get stuck in it for too long and dont feel desperate to block it out or numb it with other feelings. There’s room for it all.

Fearne Cotton (Happy)

Tomorrow is a new day….

2018 is a brand New Year full of empty pages ready to be written and if I let the dark cloud s

starswallow me all that will happen is my hopes and dreams will be spat out and if we don’t have hope we have nothing.

Being Present 

Standard
Being Present 

 

img_3712

toasting marshmallows with mates

The anniversary of a Duchenne Diagnosis day is often described as the day people felt they started to grieve for a child they lost and with that to say goodbye to dreams they had for their child and the life they thought they would have.

I’ve been there and said things like ‘He’s never going to play international rugby now, he won’t have a girlfriend, a job, get married, he’s not going to do this or will never do that’ Chances are he was never going to play rugby internationally anyway!

But he can still have a job, a relationship, get married and maybe even become a dad.

Last week we celebrated my nephews birthday he’s 2 weeks older than Zak. My earliest memories of my nephew involve cuddling him on my huge, ready to pop, belly and introducing him to his unborn cousin and thinking of all the adventures they would get up to and how close they would be growing up.

This year was one of the hardest birthdays as it was obvious looking at my nephew who all of a sudden has grown, literally, head and shoulders above me and grown into the life of a teenager going out doing his thing, planning for GCSEs and as I silently watched I thought to myself ‘that should be Zak.’

Little did I know 15 years ago how different their lives would be.

Birthdays are often the hardest in the Duchenne community, birthdays, Christmas and diagnosis days. Why is that? Well simply put it is because we don’t know how many more of them we have left.

As our kids get older the deterioration becomes more obvious. Zak will be 15 on Monday he is more than half way through the average life expectancy. There are many things now that the condition has taken from him, things he can no longer do.

However the other day I had a moment, some may call it an epiphany. This led to me making a commitment to myself that this year I am only going to celebrate – celebrate that on 21 August 5:10pm after the most horrendously long and difficult labour my firstborn came into the world and for every day I have him I will celebrate this day.

I know that one day the 21 August is going to be a really, really tough day so why should I make it tough prematurely?

I started then to unpick this theory of throwing away dreams, of comparing lifestyles – of saying things like ‘that should of been Zak’

Zak is Zak, end of. OK so he isn’t planning his GCSEs but he is planning a future , he has not grown head and shoulders above me physically but my goodness he has in his courage, determination and personality.

He asked me the other day if I was still sad because he couldn’t walk anymore , my reply was simply ‘no not really Zak I think I’ve got used to it’ I asked him how he felt and he replied ‘I’m still sad but I will be ok in a few weeks’  he said it so matter of fact.

He makes friends easily and he may not always access that in the same way as others his age but he is popular, he is friendly, and he is kind and isn’t that what we dream of for our kids?

As I started writing this he was down the club house probably talking the hind end off a donkey! He actually didn’t get back in until 2:30am!

I’ve watched him mature over the last year – OK so maybe a little more closely than my sister has with her son but maybe that, for me, is a privilege and not something to bemoan.

I dreamt of having good relationships with all my kids and I have that with Zak we have a great bond and he makes me laugh every day.

img_3368

Amazing big brother

He’s an amazing big brother he teaches them naughty words, gives backers on his wheels and will still play minecraft and lego heroes with Sian even though he has moved on to games above her age.

img_3947

A rare moment of laughter in the midst of dementia.

He has courage way beyond his years and a sensitivity to situations and people that most kids his age and even some adults probably don’t have. Just the other day I had the privilege of watching him visit his Great Grandma in the home, the smile and cheer he gave not only to her but to the other residents. He really does have the gift of the gab and the ability to make people laugh.

On the flip side he has the most amazing teenage outbursts. His version of stomping up the stairs is slamming his fist on the lift door opener and going up shouting things or muttering to himself! The other week he decided he was so annoyed about something he actually stropped out of the house and went around the block to calm down!

 

Zak’s journey in life has gone down a very different path to the one I imagined when he was safe inside me and the one I imagined before diagnosis day, but this is the journey he was destined for. If I travel that journey with him clothed in grief and sadness I am going to miss out on the beauty that the journey can give me and one day, when the journey ends, I will look back, and regret not being in the moment and not being truly present to make that journey with him.

As I tidy this blog post up and make the final edits I can hear Zak chuckling away to himself, messing around with Itunes and singing away. He is so up for his birthday tomorrow and so excited that it is contagious!

So Happy 15th Birthday Zak and here is to every other happy Birthday that I will be lucky enough to celebrate with you.

I can’t wait to see what the rest of your future holds and the challenges you beat. You’ve got this kid and I am right there with you.

img_4021

Mr independent

Disclaimer : it has taken me 13 years to reach this point. It has not been an overnight process and I am not saying it is easy and in no way playing down the difficult journey we make as parents. I may also have a huge wobble tomorrow morning when his birthday actually arrives! However I will hold fast to this commitment to fully celebrate.

We each have to find our own way in our own time. Xxshakespear

My manifesto – finding Calcutta

Standard

I think for me this has been the most emotive election I have been able to vote in, people who have never engaged in politics before have been vocal on social media platforms, and more young people have taken up the call to register to vote.

According to one source

More than 714,000 young people have registered to vote since the snap election was called. This was following a series of social media campaigns urging Facebook, Twitter and Snapchat users to sign up.

Our under 25s have sent off nearly 16,000 more applications than any other age group since the Prime Minister announced the snap election on 18 April.

They made up more than a third of the 150,000 potential voters who registered that day – a spike of around 140,000 in 24 hours.

I think this is amazing, our young people are our future and we need them more than ever engaged in grass root politics and standing up for what they believe in. Instead of adopting a ‘what is the point attitude.’ The young people I know and I have seen on social media have really got involved and have voiced opinions and most of all believe they can make a difference.

We are not all going to be happy with the result of this snap election, I have seen some extremely heated debates, mostly on Facebook, and I know I am going to be gutted if the party I vote for does not win. However one person said to me today, who actually is of the same voting persuasion as myself,  he said

‘At the end of the day it won’t change anything, It is us (as in we the people) who make the world work’ and you know what he is 100% right.

So I challenge you – Be your own party, have your own manifesto, be determined no matter what the outcome tonight/tomorrow morning that you will make a difference where you are and with what you have.

My manifesto would be one based on Love, Forgiveness, Justice, equality and Humility

My party pledges would be

image004

1. I will promise to look out for those in need, to bring comfort where there is pain, to bring joy where there is sadness, to bring love where there is hate and to bring peace where there is conflict. (sure there is a song in there somewhere)

2. I will bring up my children to be law abiding citizens and to be compassionate

3. I will instil in my children the value of work and of contributing to society in the individual and unique ways that they can

4. I will use my talents and my gifts

5. I will respect the rights of my neighbours

blog

6. I will spend my money wisely and support the local economy wherever possible

7. I will speak up for those who have no voice and stand with the marginalised and the oppressed and you know what this won’t always be done in a quiet and calm manner, sometimes we have to shout, we have to get angry and we have to get into that metaphoric temple and turn over those tables! Injustice makes me angry, sometimes standing up for what matters is hard work and actually you may not always be popular for it.

8. I will go forward in love and not look back in hate

9. I will speak a language of truth and love and not one of lies and hate

10. I will care for my loved ones young and old with dignity and compassion and I will fight for the rights when they can no longer

11. I will support my children to make wise choices

12.I will respect our public services and I will not waste resources but use them wisely

13. I will be charitable with my time and my money

14. I will not expect anything handed on a plate but will work for the best possible outcomes for myself my family and my community

15. I will be a critical voice where needed and on issues that matter to me and my community

Who is it that said ‘Be the change you want to see in the world?’

actually that is a misquote as I have just found out from google

This is the closest verifiable quote

“If we could change ourselves, the tendencies in the world would also change. As a man changes his own nature, so does the attitude of the world change towards him. … We need not wait to see what others do.”

Ghandi

We can all make a difference to someone and we can all make a difference within our communities.

To some this may seem emotional bullshit but to others it will hit the spot. Depending on who is in power tomorrow morning when I wake up ( I will fall asleep during the election coverage) I may have to work hard at my pledges and I will have to become better equipped to stand with those who are marginalised and to ensure a fair and equal society BUT whoever is in power I know that we can all still make a difference.

mother teresa

 

and so before I go to cast my vote let me leave with you with this fabulous song!

I am starting with me….

joyful noise man in the mirror