Monday, 13 April 2015

A Lullaby For A Royal Baby


A LULLABY FOR A ROYAL BABY
Lyrics by Adam Bojelian
Music by Wolfgang Amadeus Mozart
(Minute & Trio in G (K1)

Sleep softly my princess*,
Sleep softly my princess,
As you do, all night through,
I’ll be there,
And the angels too.

Sleep softly my princess,
Sleep softly my princess,
As you do, all night through,
I’ll be there,
And the angels too.

Sleep softly my princess,
Sleep softly my princess,
As you do, all night through,
I’ll be there,
And the angels too.

Sleep softly my princess,
Sleep softly my princess,
As you do, all night through,
I’ll be there,
And the angels too.

Play boldly my princess,
Play boldly my princess,
With a tickle,
With a giggle,
Play boldly my princess.
Play boldly my princess,
Play boldly my princess,
With a tickle,
With a giggle,
Play boldly my princess.

Play boldly my princess,
Play boldly my princess,
With a tickle,
With a giggle,
Play boldly my princess.

Play boldly my princess,
Play boldly my princess,
With a tickle,
With a giggle,
Play boldly my princess.

Sleep softly my princess,
Sleep softly my princess,
As you do, all night through,
I’ll be there,
And the angels too.

Sleep softly my princess,
Sleep softly my princess,
As you do, all night through,
I’ll be there,
And the angels too.

If the baby is a boy the words wee prince should replace the word princess
© Adam Bojelian 2013

Sunday, 29 March 2015

A CELEBRATION OF THE LIFE OF ADAM BOJELIAN

Thank you everyone who has sent messages of condolences following Adam's tragic death from sepsis. Your messages and all the wonderful tributes these have been a great comfort to us all.

We hope you can join us to celebrate Adam's life.

If you are able to attend, please click here to confirm attendance:-
https://www.eventbrite.co.uk/e/a-celebration-of-the-life-of-adam-alexander-bojelian-tickets-16370449455

Please do share this invitation with anyone you feel may like to attend.

Many thanks

Zoe & Paul Bojelian





Sent from my iPad

Sunday, 8 February 2015

Why Disability Matters Matters

I am honoured that the RCPCH asked me to write a Rap for the launch of Disability Matters on 5th February 2015.

Unfortunately I was too poorly to be there, but I did manage to read it using my iPad voice from my sick bed.

I also wrote some music to go with it using garage band.

You can hear it here:- http://www.eduzineglobal.com/88/648/why-ads-poetic-rap-matters

Please do spread the word about #DisabilityMatters and sign up to it.

If every body who works with children and young people completed the modules the world would be 
a better place.  

You can find #DisabilityMatters here:-

www.disabilitymatters.org.uk

Monday, 22 December 2014

It's A Wonderful NHS!

Thank you everyone who organised, contributed and came to the best party ever.

The NHS at it very best.

Rob Webster tells more here:-


And here is a link to the NHS Employers page where you can see all the fun:-


We are so lucky in the UK to have an NHS full of so many stars!

Thank you for making my Christmas the best ever!

Sunday, 21 December 2014

My thank you speech from my party 19th December 2014


Thank you everyone for coming to my party today.
Especially everyone who has travelled a long way to be here.  
People have come from London and Scotland! 
Thank you everyone who has sent messages.  Thank you to the brilliant choir.
Also thank you everyone who has supported me through a very tough
year, both everyone here today, and all my friends on twitter.
Thank you to everyone who has given me a voice, especially Kath Evans, Rob Webster, Eduzine Global, Young Epilepsy, and all at NHS Change Day.  
Thank you everyone who has helped me with my fundraising, while I been in hospital.  Together we have raised over two thousand pounds.
Special thanks to cousin Sean, ( who is here today) for making the Commonwealth Games such fun for me, (I was almost as excited as Uncle Neil that you were in the Games). 
Thank you everyone who took part in my World Cup sweepstake for making that so much fun.
Thank you everyone at Leeds Children's Hospital, for looking after me, especially the ward 40 nurses, you are the best .
Finally thank you, Kirstie, Vanessa,, Danni, Sam, Rob, and everyone at Horizon & NHS Employers & NHS Confed for organising the world's best party.
Sorry I'm far from my best today. I was determined to be here. 
Thank you everyone, I'm overwhelmed by your kindness. 

Friday, 10 October 2014

My Next Steps in Fundraising...

I love fundraising, it is one of my hobbies.  Planning things and raising funds always cheers me up.
I've made lots of good friends through fundraising, especially on twitter. Hopefully the funds I have raised have also done some good, even if it is just a little.

I've got a number of fundraising projects & plans at the moment.

I'm selling desk calendars with my poems for Young Epilepsy.

I'm also selling mugs with my Leadership poem for Leeds Children's Hospital Appeal.

If you would like either please do contact me via this blog or on twitter @AdsthePoet

Mum is helping me organise a "Bake Off" competition in my village. My village friends
will decorate cup cakes and cakes, with prizes for the best designs for people of all ages.
We will then auction the cakes with proceeds going to Young Epilepsy. There is already 
a lot of support for the idea in the village and I haven't even set the day yet.

Last year for Children In Needs I auctioned me writing a poem for the winner. It was very popular and the winner @kirstie79 loved my poem Happiness, so I'm thinking of doing the same this year.

I'm also looking ahead to next Spring when the weather is better.  I have hundreds of books, so I'm thinking of holding a book sale for @Readwell in my lane.  I also have lots of teddy bears so I could include some of them too.

Sometimes being in hospital is really tough, but planning and organising these activities really helps me get through tough times.

Thank you everyone who has supported my fundraising. You are superstars.

Adam

Tuesday, 7 October 2014

@JennytheM Goes to Number 10

The best midwife on twitter named Jen,
Got invited to meet Dave at no. 10,
He invited her in,
To hear about skin to skin,
The best thing for babies, Amen!

(C) Adam Bojelian 2014

Saturday, 4 October 2014

Leadership

This rhyme is a puzzle, as you will see,
This rhyme tells you what a good leader should be.
A good leader respects the young and the old,
A good leader observes and is prepared to be bold.
A good leader is brave and will try something new,
A good leader works hard and gives praise when it's due.
A good leader expects the best from all staff,
A good leader brings happiness and shares in a laugh.
A good leader supports patients and gives them the best,
A good leader teaches staff to be ahead of the rest.
A good leader explains if something goes amiss,
A good leader rejoices in times of great bliss.
If you study this rhyme and look very close,
You'll discover the leader I admire most.

(C) Adam Bojelian 2014

Tuesday, 9 September 2014

Thank You Leeds NHS Staff


On 12th September 2014 I will have been in hospital for a whole year.
At times I have been very poorly and it has been very tough but the staff have been
great. Last year I wrote a poem thanking staff here. To mark being here a year I
have written a second verse.

The good news is hopefully I'll be home soon. I do hope so!

THANK YOU

Thank you nurses & doctors of Leeds;
Thank you for your heroic deeds;
Thank you for all you do;
Thank you for caring through & through

Thank you to the therapists too;
The school staff; admin staff & everyone who,
Has got me through a very tough year;
Everyone give Leeds NHS staff a cheer! 

(C) Adam Bojelian 2014

Monday, 28 July 2014

A Letter to UK Paediatricians


Dear Paediatricians

I have seen on twitter and heard from my mum that you have been asked to vote on 
30th September on whether your Royal College should grow to include a Foundation of Child Health.

It may seem strange to you, but mum and do chat about these things.  What happens with paediatricians in the UK is important to me, may be even as important as it is for you, as my life depends upon it.  Without wonderful care from well trained, educated and knowledgable paediatricians I would not be here today.

The vote on 30th September is important to every child and young person in the UK, so if you possibly can please do get there and vote.

Mum knows more about the new plans than most parents, as she is  Chair of the College's Parent and Carer Advisory Committee.  She explained  earlier this year why the proposed Foundation of Child Health is so important.  This is what she said:-

"I want to say why these recommendations are, I believe, SO IMPORTANT. 

My son Adam is 14, he is just one of the UK's 11 million children & young people for whom these recommendations are, in my view, crucial. 

The recommendations not only protect the College's CORE STRENGTHS, of the training, education and professional development of its paediatrician members, but they also TRANSFORM the College's governance, making it fit for the second decade of the 21st centuary and beyond. 

But perhaps the most important thing the recommendations do, is recognise the modern face of medicine, and make children and young people, rather than the doctors caring for them, paramount. 

My son Adam lives his life on a knife edge. He is hospital today, he has been in hospital for the last six months. He has spent over half his life in hospital. We have lived around the UK. Adam has had care in 2 DGHs, 2 tertiory hospitals and three specialists childrens hospitals. 

His health is complex, difficult & unusal, which means he has seen the very best and the very worst of the UK's health care. Adam and therefore my family depend on high quality care from well trained, well educated, well regulated, happy and motivated paediatricians more than most. Adam's life literally does depend on the continuing success of this College. 

But Adam, like all children, is much more than the sum of his health conditions. He is a bright, much cherished boy. Like all children, he relies on a broad team of multi-disclinary professionals to give him a good life. All children do. All children have teachers; all children rely directly or indirectly on the expertise of psychologists, child rights specialists, nurses, therapists, voluntary organisations, play specialists; GPs and many more.  

Sick and disabled children rely on an an even broader community of experts. Not just on an individual day to day basis, but at policy and strategic level. 

As Sir Ian Kennedy has argued for many years, medical decisions are no longer purely clinical decisions at an individual or national strategic level.

Members of this college can not make best interest decisions without including expert colleagues from a multitude of professions in those decisions. 

At its most grim, how many times have you heard of a tragedy involving a child where the failure of muli- professional agencies to engage is found to be at the core of the problem? 

Have you ever heard of a tragedy where too much multi-professional engagement was the key cause? No me neither. 

The College's Young People Advisory Committee and the Parent Carer Advisory Group are firmly behind opening up this organisation to multi- professionals and the goverance reforms. 

 Why? because we live daily with the consequenes  of failed policies due to the right questions not being asked to the right people; the multi-professional experts, together with children, young people & their families. 

Both the goverance and the foundation recommendations are about modernising the college, bringing it up to date with modern day practice and putting children and young people's best interests at its very centre. 

Professionally, as a lawyer, I have been involved in number of reforms of organisations. I became the Chair of PCG in October, so came late to the Goverance Review Board. What has struck me from my very first involvement, looking on "through the lens of a lawyer" is the highly professional, diligent way the college has managed this process. 
Due time and consideration has been taken.   The breath and depth of the consultation process with college members and others is most impressive. Views have been canvassed and fears and questions addressed in an impressively professional and dignified manner .

Earlier this year  Adam was the face of a NHS Change Day campaign supported by the College, encouraging all health staff to engage with child patients. The tag line for that campaign is "it is about me" 

Those 4 words sum up really well why these recommendations are so important to all the UK's children and young people.  It is them who are paramount and I believe, as well as safeguarding the future of the college and the wonderful dedicated paediatric profession, these proposals are , as they should be, about them -our children & young people. 

Thank you"

So please get to the EGM to vote on 30th September if you possibly can.

Here is the link to register:- http://www.rcpch.ac.uk/events/extraordinary-general-meeting

Many thanks 

Adam