Lucia’s Logo

In the first of our guest blogs this week, Ann, an artist and good friend who worked with Lucia on creating the logo for Live Loudly Donate Proudly invites us into their conversations in colour…

“Bright colours” Lucia said immediately! We’d just begun our chat about how she envisaged the logo for ‘Live Loudly Donate Proudly’.

Lucia’s affinity with the local landscape, and mission to live vibrantly within it, brought our conversation quickly to what the late summer was offering, right there, right then, right around us! We soon found ourselves talking over photos we’d just taken and sliding the colour picker about in photoshop plucking out colours palettes, directly from local landscapes.

thumbnail_colour samples to send                               Hebe 3

Lucia’s penchant for purple drew her instantly to the hillsides of heather in bloom. Whin (gorse) yellows, and the greens of a long summer, following suit. Meanwhile, I was enjoying Lucia getting a kick out of the fact that purple and yellow were ‘complementary colours’ within the colour wheel!

Our ‘logo’ conversations continued and Lucia continued to teach me. We deliberated over forms and shapes to symbolise what Lucia could express so precisely in words. Eventually, we managed to hone it all down! A pair of leaf shapes, blue and yellow, would be representative of the precious acts of giving and receiving. When the colours blue and yellow are mixed green results. So, at the very core, where the leaves met, new green growth emerges – something truly miraculous created between them, between these extraordinary acts of receiving and giving. The outer circle protectively encloses all within. Its own form, having no beginning and no end, representing the ongoing, the eternal, something unceasing.

It was just over a year later on her Gala dinner night, 8th September 2016, when the penny dropped even further and I was completely blown away listening to Lucia speak, so honestly, so eloquently, to a huge crowd of people, of her personal experiences as an organ recipient. The entire room went silent and remained so, for her every word. Lucia’s openness and wisdom deeply affected very many people in the room that night and in those moments I began to understand why the extraordinary acts of giving and receiving around organ donation are themselves, in the truest sense, fully complementary.

What a privilege Lucia, to have had these conversations with you. I am blessed in this – thank you.

And let all of us keep on talking proudly about organ donation and help ourselves understand more and more of these acts of giving and receiving.

Ann.

Organ donation awareness week – with help from a few friends…

It’s that Pink week again.  Organ donation awareness week.  There could be a building or two near you that is proudly wearing pink to provoke a conversation or two.   There will be a lot of information, stories, photos and videos on social media and in the press.  Maybe TV and radio mentions.  Banners and billboards.  Posters on buses and in bus shelters.  In some places there will be reminders on petrol pumps and beer mats.  Some of us might even be wearing pink…

Meadowhall Sheffield organ donation week 2023

Not the Space Station, just Meadowhall, Sheffield, dressed in pink to support organ donation…

This year, Northern Ireland joined the rest of the UK, and various other countries, in changing from an “opt-in” system to “opt-out”.  Instead of having to sign the donor register (we still can), we are all now presumed to be consenting organ donors, unless we opt out, or are in any of the exempt categories.  It doesn’t mean we are donors against our will, or against the wishes and sensitivities of our families.  Consent will always be sought from our families and without it organ donation will not proceed.  That makes it just as important, if not more so, to let our families know what we would choose, and to have thought about it all before we are ever in that demanding situation.

With help from a few friends, Live Loudly Donate Proudly will post a blog each day this week.  Something to help a conversation, help keep us in the pink.

It may be that a conversation that starts this week is the one that saves a life you love…

*That building…is…Meadowhall, Sheffield…

 

The Transplant Games – poetry in Coventry and Warwick…

BCH at Coventry Games July 2023In all the tangled emotions associated with organ donations, the annual Transplant Games has more than a few to navigate. This year, in Coventry, the Games brought together around 1000 participants from transplant teams across the UK, and almost twice as many spectators.

Everyone there has a story to tell, and a goal of the Games is to tell those stories to anyone ready to listen. To show what life can mean with a new start, the gift of life from an organ donor. To encourage us all to have normal conversations about organ donation; to let our loved ones know our wishes should we ever be in the position to be a donor. To say thank you to all donors and their families, known or unknown. And to raise the roof in celebration of the chance to breathe again.

In early evening sunshine, teams and supporters paraded from the shell of the old Cathedral into Broadgate, the Square at the heart of Coventry City, and the opening ceremony began. Watched by Games participants and supporters, guests and civic dignitaries and by many others in the street cafes and surrounding balconies, a young woman took central stage.  18-year-old Doroti Polgar delivered a poem.  Doroti’s younger brother, Kristof, received the gift of new life when he was three years old.  Her poem is a letter written to her brother’s deceased young donor.

In April this year, in Perth, Australia, Kristof won four gold medals – tennis, table-tennis, squash and badminton. There were more medals to come in the UK Games in Coventry and Warwick.

Kristof Polger, World Transplant Games April 2023, Perth

Doroti has kindly provided a weblink for her performance and we are proud to offer it here…Dear Justin

– or read it below…

Dear Justin, I thought about you today.

I think about you every day. 

Yet it feels strange to know that we’ve never met and never will. 

At least not in this world. Not whilst I’m still around on Earth. 

Every time I think of you, everything stands still. 

Dear Justin, I’m writing to tell you that my brother was only a few months old when he became ill. 

He couldn’t eat, drink or even sleep.

“This medicine will make him better,” 

“sorry it didn’t work, we’re trying our best,”

“biopsy next weekend,” “maybe it’d be better to lay him to rest.”

“I gave him the food, but he’s thrown it up again,”

and repeat, and repeat, and repeat. 

My parents moved us overseas as we couldn’t accept defeat –

there had to be a way for him to live.

If only the odds had seen his smiling eyes, 

bright little mind and loving heart in the way that we all did.

Dear Justin, we arrived at our new home at the end of March:

we lived on the tenth floor of a flat overlooking the hospital;

the place where they told us he would need a new organ to live.

That a new organ is something only somebody else can give.

Dear Justin, he waited for the call with the phone grasped between his small fingers. 

The glass table which we sat around reflected his jaundiced eyes like a mirror.

We waited. The phone slept by his bedside.

We waited. The phone sat by us in the daytime.

We waited some more. And more.

We waited. And the phone rang.

My parents grabbed the bags that were already packed and said goodbye but came back the next day for it 

wasn’t a match. 

We waited. The phone slept by mum’s bedside.

We waited. The phone sat by her desk in the daytime.

We waited some more. And more.

We waited. And the phone rang.

My mum rushed from work and I was rushed from school to say goodbye, but they came back again for it 

wasn’t a match.

We waited. The phone slept.

We waited. The phone sat.

We thought of the sadness another would have to go through for him to receive his gift.

We dreamt of the new life his gift could bring.

And we waited some more. A week. Two weeks.

And the phone rang for the third time approaching February’s third week.

My parents grabbed the bags that were already packed, said goodbye and didn’t come back the next day for it 

was a match. 

It was the night you had gone to heaven and given him a second chance.

Dear Justin, his eyes turned from jaundiced to white in a matter of days, and we celebrated his third birthday.

Candles weren’t allowed on the ward, and he couldn’t yet eat cake, 

so we bought a teddy and decorated his bed with banners for the special day. 

Dear Justin, he started to stare out of the window each night, asking which star you are. If you are even a star at 

all? 

Maybe a cloud in the shape of a smile or a heart, or even the whole sky when the sun is out. 

He asked if you’re watching him, 

he asked me if you are proud.

He asked: “why is it that he had to die because of me?”

And I know that if you could, you would have answered this, so I answered him: ‘he didn’t die because of you. 

He died and chose to give his gift to you.’

Dear Justin, my mum wrote a letter to your family.

She began writing even though she didn’t know how to start it.

She said ‘thank you’ didn’t seem enough, 

so she filled the letter with photos and

all the things he can now do and dream of. 

Your mum sent a letter back a few months after,

along with a portrait a friend of hers had drawn of you and him sat side by side. 

Dear Justin, we told him all that your mum said about you.

We told him your name, and gave him the portrait of you together in an orange frame.

He wanted to hug you. He wanted to meet you. 

But we told him that we can’t in this world. 

Not whilst we’re still around on Earth. 

So he built a teddy, gave it a heart, named it Justin, and hugged it every day and every night. 

He still dreamed about meeting you,

but we knew that meeting your family would be the closest thing to that dream coming true. 

Dear Justin, we met your family on a day in early December. 

Your mum told us stories about you. 

She told us that your favourite colour was blue,

and he smiled because that was his favourite colour too.

Dear Justin,

Today marks twelve years since you went to heaven.

Today we’re celebrating twelve years since his gift – as he blows out the candles of the cake my mum stayed up 

all night to make, 

as we light the candle to remember you today –

I think back to the day your family took us to your favourite place…

From the shape of the leaves to the way the wind blows,

To the hope with which these trees grow,

The freedom with which the butterflies sing temporary goodbye,

And the endless life of your favourite-coloured sky.

From the way our feet fall into your footprints,

To your favourite bench on which we sit –

I see a piece of you living in everything… 

[Twenty-one second silence in honour of the twenty-one years Justin lived]

Dear Justin,

Twenty-one feels long when you 

stand through every second of it in silence.

I wonder how it felt to live through it in your silence.

I wonder if you know how loved you are.

I wonder if you know much you are missed

I wonder if you know how much he cares for your gift.

Dear Justin, people may say that it’s impossible to 

have memories of someone you’ve never met,

But I want memories of you. 

I want to remember you.

We are remembering you for what we know is true:

that even when life no longer brought you light, 

you raised your voice to allow your light 

to bring life to someone else.

That you chose for your last gift on Earth to be the gift of life

 

When is a law not a law?

Daithi's Law Stormont 1.6.23Stormont lawn,1st June 2023

Northern Ireland has a new law.   It went live yesterday, 1st June 2023.  Despite the title of this blog (see later) it’s a very real law.  Too much has gone into bringing it into being for it to be anything less.  Years of hard work, lobbying, campaigning, raising awareness, educating, persuading, hoping and, somewhere in there, praying.  And, in the last few years, a young man in the centre of it all, his smiling, determined face in countless photos and videos as politicians, ice hockey Giants, boxers and many others join the queue to stand beside him.  His name is on the new law that brings Northern Ireland into line with organ donation legislation elsewhere in the UK.  Dáithí’s Law.

Dáithí Mac Gabhann was born in October 2016 with Hypoplastic Left Heart Syndrome. It means that Dáithí was born with half a working heart, the left side not fully developing before his birth.  His future will depend on the possibility of a successful heart transplant from a suitable donor, and the generosity of a family that may be able to offer hope to another from the midst of their own hardest times.   Dáithí has been waiting for such a bitter-sweet gift for five years…

Yesterday in Stormont, the N. Ireland Assembly building, representatives from organ donation awareness charities and campaigners came together with teams from the Department of Health, NHS Blood and Transplant organisation, and the Public Health Agency to announce and celebrate the hard-won achievement of Dáithí’s Law.

There were speeches, short and engaging, introducing us to many of the hidden players in the long game that has finally landed this law over the line.  Thanks all round, expressed in words and applause and felt at real depth around the room.

Then Dáithí’s dad, Máirtín.  He spoke with the straightforward authority of love and gratitude.  Gratitude to the campaigners and public servants, many present in the room.  To community friends and family, to the best and most faithful in the media, and to others who have given immensely over the years and are no longer physically present with us.  As Máirtín expressed his deepest thanks to Seth, his wife and campaign partner, and then to his son, Dáithí, he managed his tears better than more than a few others in the room.

A very proud father, Máirtín said, who has learned and is learning, so much from his young son.  Grateful to him and inspired by him to go through the years of campaigning at high cost to each of them, planting and nurturing hope not only for Dáithí but for many, many more waiting on the transplant lists.  Words done, Máirtín lifted Dáithí into his arms.  There were tears then, and a standing ovation, and Dáithí’s law is live.

So.  The new law.  Simply this: its intent is to increase the current number of organs available to those in need of a transplant.  Instead of having to actually sign the register, or tick the box on the driver’s licence application (“I always meant to get round to it, just haven’t done it yet…”), the new opt-out system means that all adults in NI, unless in an excluded group, will be considered to be organ donors after death unless they chose to opt-out.

When is a law not a law?  Well, technicalities, legalities and philosophy aside, the new law will not mean anyone is obliged by the medical profession, or the government, or any other power-that-may-be to become a donor against their will.  Everyone will still have a choice – people are free to opt-in, opt-out or amend their decision at any time.  You can do it today.  Or tomorrow.  (Today’s better…)

And whatever your decision, whether you are happy to be on the list as a presumed donor or just never got round to opting out, your family will still be consulted (they always have been, so don’t presume that just because you ticked a box some time ago the job’s done.  Your family will still have the word.)

Imagine you are in that tiny percentage (1%) who dies under the right circumstances to be considered a possible donor.  When your death is confirmed, and only then, your family may be approached by highly trained staff to consider the possibilities of organ donation.

If your family know your thoughts and wishes about the possibility of donation you may have given them a gift that will help them in those difficult moments and, as donor families often say in the most moving ways, well beyond.

And that’s it.  It’s a new law, but it’s still up to you.  And your family.  So think about it, talk about it.  Make it part of a conversation with your family or with others close to you so everyone is certain of each other’s decision.  Don’t keep it to yourself.  And if you, or your family, are donors, or prepared to be donors, then say so.  Be proud.  Be very proud.  Live Loudly, Donate Proudly…

To find out more, visit Organ Donation NI  #YouCouldBeALifesaver

Transplants, a cup, a shield…and camogie

OK, if you’re not from somewhere in Ireland  you might have to google camogie…”an Irish stick-and-ball team sport played by women.” Or, today, on a wildly windswept and often wet complex of pitches in Ballycastle, it was played by about 150 eleven-year old girls (maybe more, hard to count, they didn’t stand still for long).

This was the second camogie blitz graciously organised by Cross and Passion College, the home school of Lucia, and her elder sister, Alice. In honour of Lucia’s passion to encourage conversation about organ donation, the school set up this annual event, inviting N Ireland’s Year 8 girls (first year of our Secondary Schools) to play for the Lucia Quinney Mee Memorial Cup, and the Live Loudly Donate Proudly Shield.

Read More »

New year, New You? No thank you…12 Days of Christmas

January. The month of the detox. The cleanse. The flat tummy tea. The diet. The gym rush.

The thing is, in essence, I actually really like the whole new year, new goals concept. I love a fresh start, a plan and feeling motivated to go for my goals.

What I really hate though, is when the diet industry hijacks the entire thing. They profit off making people feel guilty about the perceived ‘over indulgence’ of the Christmas period. Read More »