18 for 18…

Read More »

B.E.M🎖

This day last year was possibly – probably – the most insane day of my life.

Late the night before, the New Year’s Honours List was released. I was the youngest on the list, being awarded a BEM for services towards the promotion of Organ Donation.

Read More »

Lucia posted these words in 2018, and showed us just what they meant through the year and 5 months that followed…

Everything happens for a reason. What will be will be. It is what it is.

Those ‘fate will have its way’ sayings…what does everyone think of them?

Personally I believe in that kind of thing – to an extent. I do think things happens for a reason.

I just think that sometimes the reason is because I’m a freaking eejit. Sometimes the reason is because I worked damn hard. Sometimes the reason is because there was a goal I wanted to accomplish. Read More »

Now, to be fair, most of the books I read in 2018 were textbooks as I was finishing A Levels.

However, after I had a break from reading textbooks…I did finally pick up a book that didn’t contain chemical equations, biological diagrams or anything to do with sports science. Although they are all extremely interesting subjects – I needed a break.

So, what did I read? A light hearted comedic novel? A romance story? A crime thriller? No no no, I read a non-fiction collection of writings from some very inspiring women – a book called ‘Feminists Don’t Wear Pink…And Other Lies’. Read More »

The most wonderful time of the year.

For me I think so yes.

For many of us, Christmas definitely is the most magical time of year.

Although, for a lot of people Christmas can be a reminder of the person missing round the table, or of the difficulties of social situations or the nerves that come with the excess of food and drink that are part and parcel of Christmas. Read More »

The wait…

Imagine life with a pause button. The story stuck in one place, just waiting to restart.

I think this is the best way I can describe the feeling of waiting for a transplant. Waiting for the phone to ring, to be told there is a donor. To be told it’s time to press play again. Read More »

“So here it is, Merry Christmas…”  The season of repeats.  They do it on the telly, and we do it for ourselves.  We all have our own Christmas traditions, whether you charge into it from early November taking every opportunity you can manufacture to make the glitz and glamour of it last as long as possible, or you try everything to avoid the hype until the last minute, or even prefer to hibernate and wait for it all to go away.  Whatever you do, that’s what tradition is – repeat.  If you go to church you may hear the same story and sing the same carols.  No apologies.  Decorations, trees, recipes, music, films…the ones they show on the telly or the favourites we choose to stream ourselves.  (We like Alistair Sim’s version of “Scrooge”.  It’s old now, 1951, but it’s still hard to beat, and Lucia laughed louder than anyone else every year.)

Looking for inspiration for the 12 days of Christmas blogs this year, we re-read the last set Lucia wrote, from Christmas 2018.  We loved them.  So here they all are again, one day at a time.  Repeats, with no apologies. And yes, we’re proud of her every word….

 

Once upon a Christmas…

So. We’ve all had our dinner, we are suitably stuffed with Celebrations, and the torn wrapping paper leaves a trail of destruction under the tree.

The whole family is together. Someone is probably asleep on the sofa and there is most likely a Christmas special on the T.V. Read More »

Birmingham Children’s Hospital is celebrating its 160^th anniversary this year.

On Monday this week (21^st November), a 7m x 8m mosaic of the hospital building, as it was in the early 1900s, was unveiled in Birmingham New Street Station.  The mosaic, on the floor of the station’s main concourse, is made up of over 850 images of the faces of past and present patients and staff.  And Lucia is smiling in there too…

 

The city’s modern hospital treats over 90,000 sick children each year, from across the UK, giving them and their families some of the most outstanding and professional specialist paediatric care available.

On this day (24^th November) fifteen years ago, good friends kept us company in Birmingham while our eight year-old Lucia went through her first liver transplant.  The operation took about six hours. Late in the evening we were eventually able to see her, well-sedated, in the Paediatric Intensive Care Unit.  Our relief, though still only partial, was palpable.

Meanwhile, somewhere else, a family was only just beginning their own bereavement.  In their darkest hour, in kindness to people they knew they would probably never meet, they had given Lucia another chance at life.

Over the next twelve and a half years, our family discovered an exemplary quality of care and friendship from the hospital staff, especially the medical, surgical, and nursing teams working through the Liver Unit and Intensive Care, the physios, nutritionists, psychologists, teachers and play therapists, the Chaplaincy team, admin, and many more.  A care and kindness that went well beyond the hospital walls.

It took us into the Transplant Games.  It gave us a Transplant family including other patients and their relatives that have proved to be solid company through all those years.

When Lucia moved from the direct care of Birmingham Children’s Hospital to the adult equivalent, she wrote a letter of thanks to those who had shared in her care.

“…I will always remember the way I was treated with such respect, dignity and love and am forever thankful for the explanations I was given.  (Why do I have to be on this medicine?  What does this tube do?  Why should I have another transplant?)  No question too small and all explained to me in ways I could understand – everyone knew me so well, not just as a patient but as a person. 

Knowing I like to have all the information, knowing that I wanted to take responsibility for my own care and treatment plans, I wanted to know what was happening each step of the way and be in charge of my own body.

All of these things were so well understood and catered for by all the staff here.  Thank you.

I will always carry BCH in my heart and I will continue to take inspiration from you all.

Just Thank You, for Everything!…”

That gratitude, deepest and clearest in Lucia, became the norm for us all through our years with BCH and beyond, and the friendships formed remain as real to us today.  Although the years brought their share of fears and tears, and now include an always unfathomable sadness, they will forever be marked and held together with gratitude, steeped in kindness and caught in the wonder of Lucia’s own life, of her continuing light and energy.

In this 160^th year of the Hospital we will drop our donation into the BCH “bucket”. Maybe you might do the same.  (Click on BCH Appeal)  Is it ever too much to say thank you again?

Last night’s blog was posted a little earlier than usual.  Not because of Strictly Come Dancing (we could watch that on “catch-up”) but because we donned warm hoodies (organ donation-branded, of course) and went off to watch a game of professional ice hockey.

Not our usual habitat, and we spent some time preparing – how does it work, what’s the rules, how long does it last, how many players, how can you keep track of something so fast..?

Tickets had been organised for representatives of Northern Ireland’s organ donation groups by the Belfast Giants and Donate4Dáithí , the campaign run by the family of 5-year old Dáithí Mac Gabhann.  Dáithí, after four years waiting for a heart transplant, is already a campaigner. He commandeered the moment on the big screens in the intermission’s live interview with his Dad and made his point loud and clear  – “Organ donation saves lives!” The information stand in the central place on the Bridge was busy with people coming to learn more about transplants, meet Dáithí and Máirtín, and leave inspired to sign the register and talk with others.

Oh, yes, there was also a great game of ice hockey that we did, more or less, manage to follow, and after all the razzmatazz, the home supporters left the scene happy with  a 5-0 win.

A huge (alright then, a Giant) campaign boost for Organ Donation Week in this part of the world.  Big team, (some of them very big), big advertising, loud noise, strong message – all that energy and effort channelled into the tiny little bottleneck of a short conversation between a few family members.

But if that works, it can burst out of the bottle on the other side and may spark a new chance of life for one, two, up to nine people.  Nine new lives.  All their worlds open again, for them, their family, friends.  All they can enjoy, say, do, achieve.  All they can sing, dance, spin, laugh, create.  All they can give, share, inspire.  All they can love, and be loved.  All that, and much, much more.  All from opening a conversation about organ donation.

It’s worth everything Organ Donation Week can give to it.  Can you give it a few more minutes, too?  If you’ve already sorted it all with your family, and know what you might each do if it ever came your way, thank you for that.  Really, thank you.  But don’t stop now.    Start a conversation with someone else.  Spread it.  Pass it on.  Live Loudly.  Donate Proudly…

Organ Donation Week, and it’s Saturday night so, unless you’ve got something more pressing to do, sort the popcorn, sit back, kick off your shoes and watch a couple of films.  Short ones.  Very short.  One is funny, clever.  The other, only a few minutes longer, is gentle, courageous, beautiful.  Both are brief glimpses into much deeper stories.  Behind the words, the glances, a depth of experience and emotion that is dizzying.

Luke Alexander is, we are very proud to say, a friend of ours.  Lucia found him first.  When Luke was 12 years old his life was saved by a 13-year old stranger who had told his parents he wanted to be a donor if anything ever happened to him.

Ten years on, Luke is a cyclist, a runner and a swimmer, enjoying the chance to compete in the Transplant Games.  Luke and Lucia were both members of the GB and NI team at the World Games in Malaga, Spain (2017) and two years later in Newcastle, England.  Luke recently completed his Coventry University degree in Media Production.  He used his film-making skills to create unique insights into the experiences of organ transplantation.

In 2017, at “Talk, Tell, Transform”, a Children’s Liver Disease Foundation week for young people with liver disease or transplants, young people turned their stories into short films.  Luke took it a stage further and interviewed himself, playing…well, best just to watch it, it’s less than five minutes short.  The link is at the end of this blog.  There’s another one first…

As Luke went through the intensity of his own experience of liver disease, and then transplant, he was sensitive to its impact on others, especially the young boy and his family whose kindness saved Luke’s life.

“I always think about him, whoever he may be. It’s consciously on my mind when I make decisions,” said Luke, adding that the boy’s parents had suffered an incredible loss.  “It’s something that I never forget, day in, day out.”

As well as the boy’s parents, Luke is aware, too, of the impact of his journey on his own family.  Further inspired by people he has met at the Transplant Games, Luke’s new fifteen-minute documentary, “The Other Side”,  aims to be a cathartic experience for parents who have been through, going through, or are about to go through that journey.  It is also a bravely understated insight for the rest of us.

No more to say, this is not a review.  Just watch the film (permission to skip the ads).  Better still, watch it with your family, with friends, and see where the conversation goes afterwards.  You never know when a conversation started through this film may save a life… Thank you, Luke, three generous families, and all those donor families we may never know….

The Other Side

Luke’s story – CLDF Talk, Tell, Transform 2017

                                                                                 Learn it, and pass it on…