Twelve days of blogs. On this last day of Christmas, an invitation to a celebration.  A huge jump into what for many in the organ transplant world is the highlight of the year, the Westfield Health British Transplant Games.  This year they will be held in Nottingham, 1st – 4th August.

If you’re a donor, or you’ve received a transplant, there’s a place for you to participate as a competitor.  You don’t have to be a practised athlete, just someone who wants to have a go and give it your best.  Any age.  Teams are registered through the hospital that carried out your transplant so ask for your hospital’s Team Manager and sign up to come along.

You could also participate as a volunteer, or a sponsor or fundraiser.  (More info.)

Or you could just come along anyway.  Come and watch, come and support, come and cheer people on.  Sign up for the 5k or 3k Donor Run (or Walk!), a colourful and fun adventure for the serious and not so serious, all proud to raise awareness of the incredible world of organ donation and life-transforming transplants.  Watch the social media for the Games and pass the word along.  Just come and be grateful that it’s all there, miraculously, for all of us if and when we need it.

Or come to say thank you, one more time, for the donors and their families.   You’d be joining in with the loudest and longest thank you of the Games…

You may have given your consent to be considered an organ donor yourself. Donating blood, plasma, or bone marrow are also options as life-transforming gifts.  And letting your family, your loved ones, know what your wishes are about organ donation is as important as ever.  Without their consent it couldn’t happen.

If you’ve already done all that with your family, and you don’t need to make it any plainer, don’t stop there. Start a conversation somewhere else. Have fun with it. Wear a badge. Hang an organ donation air freshener in your car and give someone a lift. Use a lanyard at work that invites the conversation. Carry a rolled up copy of the Organ Donation Times (there isn’t one – you could start it?). Have your head, arms, or whatever tattooed with something that will start the conversation – some people have, seriously. As one friend of ours says in the name of her new Instagram account for organ donation awareness, “Skip the small talk”.

However you do it, wherever you are in any of the blogs these twelve days of Christmas, somebody, somewhere, could already be saying thank you for you.  From the deepest place in their hearts and minds. Even if they don’t know you. You may be, or become, a donor. Or you may be the “single word that can make a heart open”, the ripple that becomes the crashing wave of someone else’s gratitude.  Live Loudly Donate Proudly…

School’s back, or soon will be for everyone else. Terms will also start in many hospitals, too, so children who are inpatients don’t have to miss out.

There are lots of ways of helping children keep up with school progress and interests in learning while they are in hospital, or off school for long periods due to their illness.   Some of the Children’s Hospitals could have as many school staff as some average size schools.  The staff may teach in small classrooms, in corners of a ward, or one-to-one at the bedside.  Most children will be short-stay patients so teachers will have to build relationships very quickly and work with flexible lesson plans, as well as often manage some intense emotions.

For the children it is a way to recover some normality, something familiar, creative distractions from serious illness and the traumas of being in hospital.  But it’s not just ‘back to school’, it needs to be tailor-made to suit the students and their circumstances.  The vision of the James Brindley Academy, providing schooling through Birmingham Children’s Hospital, is “…to ‘Think Differently’ to inspire young people to overcome all barriers and achieve their dreams.” (A good model for education everywhere?)

For those children, and sometimes their siblings, in hospital for lengthy stays or frequent visits, the school team is a valuable part of the picture.  Good support for parents too, seeing their children cared for and enjoying opportunities to develop their skills and learning.  Time to slip off for a coffee, or a phone call, with gratitude to yet more people in the team.

Meanwhile, in the home community, there are teachers who help the class show their care for their absent friend, holding their space in the place they know best.   Cards made in class time, letters written from school friends and sent to the hospital, are treasures that reassure a distant patient that they are not forgotten and haven’t lost their place.  A ‘welcome home banner’ painted by the class.  Time given helping classmates understand the reality of the illness and the space given to the young person on their return to school.  A chance for them to tell their story, if they choose, and to be accepted and understood if not.  A novel about children and organ transplants read together in class with sensitivity and understanding.

For some it can take other pathways.  Time out of school can bring disruption to friendships and circles.  Misunderstanding of medical conditions and fears that grow in the absence of accurate information can leave someone vulnerable to isolation or bullying.   The schools that manage that well will not be forgotten (nor, sadly, will those that don’t).

How do teachers, learning support assistants, others in the school teams, deepen their own understanding of organ donation, or other long-term conditions, to make it better for everyone?  How can they sharpen their focus on the children in their charge who are in most need of support?  Paradoxically, they may be the very resources that could strengthen abilities in us all for empathy, compassion and care.

(Live Loudly Donate Proudly has helped ensure organ donation awareness materials are available for all primary schools in N Ireland, with secondary schools to have the same this year – for more see our previous blog).

Schools, like the rest of us, work best when we pay caring attention to those who need it most.  It’s repaid many times over.  Grateful for our own experience, and that of many other friends, thank you – thank you to those who make it all work through their teaching in hospitals, at home, or in our schools, teaching much more than a curriculum.  Five Gold Stars on the chart…

Maybe you are one of those good souls who was working over Christmas or New Year, keeping the engines running and the wheels turning, the ward looked after and the shop open.  If so, thank you, and enjoy your well-deserved break when it comes…

For others it was back to work on Tuesday, or today, after some time to be somewhere else and do something different.  There are more than enough wistful jokes on social media this week about finding ways to avoid going back and prolonging the holiday instead.

There are some who won’t be going back this week because of being in hospital, either as patients themselves or accompanying those they love who are ill.  They will need another set of supporters.  Colleagues and bosses who can understand enough to say, “Go. Do what you need to do. Be where you need to be.  We’ll work out all the rest between us.”

It isn’t everybody’s experience. Not for those whose hearts are breaking and must still turn up for daily work. How do you concentrate then? How do you pretend you want to be at work when everything tells you and those around you that you want to be by the side of your son, your daughter, your loved one, in their own personal, painful, frightening journey?  Sometimes it’s called compassionate leave, compassionate for a reason.  But can it still be called compassion if it starts to drain funds and doesn’t last long enough?

For those employers and work teams and colleagues who give the gift of time, and secure protection, who find ways to care and to support from within the workplace, who take up the slack for a missing colleague, keeping things going in their absence, finding ways to make it happen and getting creative with the support, going an extra mile, or two – this is also a gift beyond words. Time given to an employee is precious time given to a child, a close relative, a dear friend, a contribution that allows the best of love to continue…

Thank you to those who help us to be where we need to be. Thank you to those who work at it and guard it when it’s needed.  It can never be repaid, though it will not be forgotten, and who knows who may need it next?

 

 

Christmas and New Year can stir up a variety of emotions, some grateful or hopeful, but also some difficult. For some people, organ transplantation and related illnesses do the same.

Our mental health may need, from time to time, the trained healers.  There is no shame in that, anymore than going to a podiatrist or a cardiologist.  We need more of these services, and easier, faster access when they are there.  But it also depends on so much more than the professional healers.

It all counts.

The shop assistant saying hello and giving a smile, someone helping us find street directions when we need them, a chat over a pot of tea, the thousands of ways the web of goodwill holds us together.  Unexpected carers, who include us in their daily threads, weaving us back into normal life when we are at risk of feeling – or being – isolated.

Family and friends, giving space to listen, to speak, not making us fit a mould but allowing us to be ourselves, in our own different ways.

The networks of support for our very particular needs – like those groups in yesterday’s blog who, receiving kindness themselves, develop ways of paying it forward.

Those who share similar experiences to us and don’t need everything explaining, who know before we say, or recognise deeper issues when we scarcely have enough energy to give hints or clues.

It’s all about our mental health.  And reasons to be grateful when it’s named, accepted, befriended, and talked about.  Grateful for the skilled professionals, and for the space we give each other where we can breathe, slowly and steadily, while we regain our balance…

The countdown.  The clock ticked past midnight, and a new page began for a new year.

Whatever resolutions we make, or don’t, and whatever it says on our calendars, it’s all still to be written, page by page.  Whatever comes, and whatever we bring to it, we hope for good reasons to celebrate, good people to share it with, and good support to help us hold it all together.

The blogs over these twelve days are each about some of those good people we find through the organ transplant experiences.  And there are so many.

For most of us, our introduction to the concerns that may lead to organ transplants is not a gentle opportunity to dip a toe in a warm sea by a sunny beach but more like being thrown headlong into the shocking cold of a grey winter’s crashing waves.  Unlike the voluntary choice of a cold water swimmer, it’s unwanted and unwelcomed.  And it’s not long before the questions start to come ashore, as relentless as the waves.

The good news is that there are lots of people who can support, accompany, listen carefully, and then provide, or help find, the information that could be most useful.  (Google is not usually the best place to start.)

Because Live Loudly Donate Proudly grew from experiences with liver failure and liver transplants, that’s the path we know best, but there are many groups and organisations that have grown from or focus on issues and illnesses from all aspects of organ failure and transplants.  Many of these have been started by individuals or families deeply affected themselves, determined to offer as much support as they can to others in similar circumstances.  Like the ‘yes’ of consent to organ donation in the pain of the death of a loved one, there are countless people turning their own stories of shock and struggle, healing or not, into resources for others.

And like other stories in these twelve blogs for Christmas, their work goes on all year round.  You may come across them anytime, in the local papers or on social media, in the office, the supermarket, on the bus – anywhere, doing any of the following:

• Fundraising to provide accurate information and resources, or to support families and individuals through the financial hardship that can often accompany sudden or prolonged illness
• Looking for support to continue programmes for children, young people, parents, families, bringing them together to listen to and talk about the million and one different issues that come with transplantation, and the illnesses that may lead to it. And to have fun, ‘be normal’ with others who understand and don’t need explanations
• Adding extra non-medical resources in hospitals for patients and for their families, making their stay as supportive as possible
• Providing extra equipment, or training opportunities for medical staff, creating spaces for shared learning ‘outside the structure’
• Telling stories of others, making experiences less isolating, less frightening
• Bringing people together for coffee in public places, providing support for some and information for others
• And the list goes on…

Somewhere out there, in this new year and all through it, hidden in plain sight, are thousands and thousands of people giving their time, mental energy and ingenuity to making the place a little easier for someone else caught in these waves.  If you are one of them, thank you.  Thank you.  And thank you again.  If not, keep an eye out, an ear open, for this incredible dynamic of goodwill.  So much to be proud of. Whether we need its direct support or not, it is a good thing to start a new year knowing the uncertainty of the coming calendar is already sown with the seeds of kindness…

 

Some helpful friends:

Children’s Liver Disease Foundation

Kidney Care UK

The British Heart Foundation

NHS Blood and Transplant

Organ Donation N Ireland

Live Life Give Life

Altnagelvin Parents Support Group (Facebook)

RVH Liver Support Group (N Ireland)