Organ donation – a school for change…

Young people at the Something for Lucia 28.5.22

Friday afternoon, in a school.  Not where you’d expect to find teachers volunteering for extra time.  They should be heading for home by now, even with a bag full of homework books for marking.

We walked into the main Assembly Hall of Ballycastle’s Cross and Passion College to help prepare the space for the following afternoon. And there they were. Teachers, canteen staff, caretakers, working away like they had nowhere else to go. Half an hour before we arrived the hall had been laid out in neat rows of chairs and small tables, individual spaces for young people to sit in silence and labour through exams. The tables were already gone, chairs in neat semi circles no longer facing the front but focused on a small lectern, table and screen on the long wall. Huge purple and white flower arrangements were arriving.

Since we came back from a small funeral service for Lucia in London, in the first months of lockdown, we had been asked, sensitively, if we might, in time, “do something for Lucia” in her hometown.                                                  “Probably.  When her Transplant friends and family can travel and gather safely again.  Something.  We don’t know what.”

And this was it.  We still couldn’t really define it, so the name stuck.  A “Something” for Lucia.  In her school.  We had come to help, but with outstanding generosity and quiet pride the school team beat us to it.  We looked around the overwhelming evidence of kindness filling the hall, the corridors, the canteen, the courtyard, and stood with Paul, the Principal, our words silenced by risk of tears.                                                                                                            “Community,” he said. “It’s Lucia making community. It’s what she does.”

The following afternoon, the hall was packed.  Young people (and a few others), her cousins, friends of Lucia’s from Ballycastle, from the Transplant Games, from Northern Ireland, Scotland, Wales, and England, even El Salvador, contributed their stories, photos, music, laughter and tears inspired by their much-loved friend.  Pieces of a growing mosaic.

This isn’t a report of the day.  It’s about those young people.  They inspired, as Lucia always said they would. She believed in young people. And here it was. The deep strength of love and conviction, humility in being part of something that had caught us all in a circle of energy.

They were young – as Lucia was – when her autoimmune hepatitis became evident, and her transplant world began.  They accepted what was happening with love and emotion, learning alongside us all. Taking it in and trying to understand.

When Lucia came to plan her first public event, a fundraising day for Children’s Liver Disease Foundation – games, cakes, and a presentation on organ donation in the Council Recreation Centre, her sister and her peers organised it with her.

There were many other presentations to classes, school assemblies, and youth groups.  Presentations at conferences and workshops with health professionals, and politicians.  The ones Lucia enjoyed most were with children and young people.

That’s where Live Loudly Donate Proudly was born.  A deep conviction that accurate information be provided to children, conversations about organ donation, and everything connected to it, including death and dying, made normal.  Normal for children and young people who often, to the surprise of adults, understand the essentials first and fastest.

That shaped Lucia’s vision of including organ donation awareness on Northern Ireland’s National Curriculum.  With ready support from her school, Lucia presented her case to the Minister for Education.  It connected.  Lucia’s campaign continued, even when many of our politicians had “left the room” for a few years.

By the time the politicians returned, they were too late to meet Lucia.  Her school, family, and friends presented her vision again, to the Departments of Health and Education.  By then, the Health Department was preparing a process of public education for a potential change to the law on organ donation.  Lucia’s vision fitted perfectly.

With work from a team of transplant recipients and their families, teachers, donor families, and health professionals, lesson plans for Primary and Secondary Schools are now almost complete and ready for piloting.

Our children, young people, with the correct information and obstacles removed, are an engine of change.  Changing a law is one thing.  Changing a culture grows from a different place, and Lucia’s vision was to nourish one of its deepest and most fruitful roots.

The “Something” for Lucia gathered people together who each had their own pieces of the mosaic of her life.  As we listened in that school hall to her friends, there was no doubting that Lucia was right.  In those children, now young women and men, who had learned of organ donation, of life, through their own experiences as they grew together, it was palpable.  They carried Lucia’s story, and the vitality of organ donation, with passion, gentleness, courage, laughter and wisdom, with love.  Seeds of a very special world.

You were right, Lucia.  Give our children the right information, step out of the way, and watch it grow…