Wednesday, 22 October 2014

Day Twelve

1. Front Page News!

Today has been a slightly strange day. William’s story is on the front page of our local free paper. The Croydon Guardian have been fantastic supporters of our goal to increase awareness of organ donation, celebrating transplants and our donor when William takes part in the British Transplant Games and supporting William’s Wishes. This is another great piece! It does feel a lot more exposed being on the front page though. I’m not saying I’m not happy for it to be there. If the editor felt William’s courage deserves front page attention then that is fantastic. It’s just strange seeing it where it is stacked, such as in the supermarket I go into most days and outside the estate agents I pass on the way to the tram stop. You kind of feel someone could look at it as you pass and have a double take. As a journalist myself, I think it is very good for me to feel this way so I can understand better how some of the people I write about feel.

The thing that most makes me feel a bit more exposed this time though is that this interview was really from the heart at a difficult time. To put the piece in context, this is an interview I did to support William’s nomination for Child of Courage in the Croydon Champions Awards, sponsored by the paper. Because it was for this award, the piece focuses on and emphasises the things that make William particularly courageous at the moment, such as signing his own consent form for a huge operation, knowing that this as a re-transplant specifically hasn’t been survived here and knowing that when the phone rings it could lead to two outcomes, although both William and I are 100% focused and 100% believe in the positive, that there will be ups and downs, but he will get the new life he is so looking forward to. If the piece had been a general, news update about William’s latest chapter it would have been a bit different with a slightly different emphasis. The story I would have wanted to tell then is all in this piece but the headlines and lead is about what makes him so brave right now.

If it had been a general update I would have wanted the emphasis to have been on our thanks and love to William’s donor and her amazing family. That is in the piece though so I am happy for that. I would have liked it to be the headline if the piece wasn’t mainly about William’s courage. Words can never express our love and thanks to them and, as I have written before, we will remember them forever. It doesn’t make a different to how thankful and how much they are always part of William when he has a new donor. There will just be two donors and families to thank every day. William was nominated a month or so ago and the paper wanted this piece then but I said it couldn’t be written until I had written to his donor family telling them about the situation, thanking them and reassuring them that their precious loved one will remain in our thoughts, hearts and our celebrations.

I would have liked to have said more about our amazing team at Birmingham Children’s Hospital and the lengths and care they have taken to make sure the decision is right for William. That was mentioned a bit but not as much as I said in the interview. But then, I can rabbit on and the piece would have filled a whole paper if everything I wanted to share was in there. I understand the need to edit and I think they have done a good job with this piece, given the reason behind it. It’s great I have this blog to add more.

I would like to say that William’s decision to go for the re-transplant is by no means any braver than those children and families who have decided not to. There is no wrong or right here and both options have their benefits to the families but also huge, huge risks. I have friends who have chosen to make the most and enjoy what life is left and not go through anymore painful and risky surgery and long hospital stays. I respect that decision so much. It is just as hard as the one we made. My decision was made easy by William’s determination to have a re-transplant and get back to how he was feeling last year, get the energy he had then back and be able to eat again.

I also want to add that those children who had a liver and bowel re-transplant but, sadly, didn’t get to see the life at the end of the pain are our angels and heroes. In their own way, they have also donated something very special to us too. They have helped our fantastic team to learn and develop ideas and treatments that will enable them to manage William’s re-transplant better. The same goes for the children who could have survived this already had they not so sadly died waiting for their second transplant. This is what the three a day concept of this blog is all about. Three people die waiting every day on the transplant waiting list and those who died waiting for a re-transplant have taught our team valuable lessons about when it is best to consider re-transplant. All of these children have left a huge footprint in our hearts and will live on in William in similar way to those who have donated organs. I have told the mums I know well about this and thanked them for what they have done for us. All the children in the intestinal transplant program, whether living or sadly now with their angel wings teach our team, and teams across the world about an area of medicine which is still in its relative infancy and, because of all of them, William is in a better position than ever to do very well indeed and, in return, teach everyone something else to help children in the future too.

Above all, I would want everyone to sign the organ donor register. We are involved in a big campaign around that, starting very soon indeed, and I'm sure our paper will say something about that too.

Now you know the context, and the other things I would like to add, the full Croydon Guardian piece is here. It is very good, especially considering the complicated medical story they needed to summarise. I don’t like the word ‘rejection’ and prefer to use the word failure instead but I guess it is easier to understand when you use that term. I just don’t like the idea that William is ‘rejecting’ a gift so precious but that’s me, a writer who loves words and concepts rather than scientific processes.

As for the Child of Courage Award. There are a lot of children equally as brave and courageous in Croydon and everyone one of them deserves it. It’s a shame they can’t all have one. Last year, William was commended. We don’t yet know if he is in the final this year.

2. Lou

This is a poem about someone I miss so much and who I so want to share this journey with. The awesome Louise Lawrence who had so many complications and struggles after a lung transplant but fought so valiantly, until one day three years ago.

It doesn’t seem right. I can’t think it’s true.
But I know you’re not there when look for you.
No calls, no texts, no tweets, you flew
away with no goodbye
no understanding why.
Just here then gone.

I have this ache in my chest that won’t away.
But I’m ready now to think what you would say
and remember how you lived life, almost perfectly.

You were so bright, a vibrant butterfly.
Live life for the moment you would cry
as you flitted around, filling up on all that was beautiful,
then shining it out, a beacon, making everyone cheerful.

But as a butterfly, you were fragile.
Failing lungs, failing heart, but always that smile,
it was my battery whenever I faced a trial.

And I’ve got so much more than a memory.
Your handprint is here, at the heart of me
and the seed you put there became a tree
of inspiration, a new creation -
me becoming the person you could see
cause, when you looked, you believed
in something more than I thought I could be.

So now you’re here.
You’re centre stage.
And all you were flows on every page
of words and rhymes I’ll ever write
because you’re the one who showed me it was right
to dream, and fight
until those dreams come true
And, that’s what I’m doing
because of you.

3. May Diwali Light Your Darkness

I’m sitting here watching fireworks lighting up and decorating the section of sky I can see through the window. I know the same is happening all around as people celebrate Diwali. I love living in such a cosmopolitan town as Croydon and being able to learn and share the different traditions celebrated in our community. When Ellie learned about Diwali at school we decided to have our own sparklers in the back yard as we watched the fireworks around us. As you know if you have read earlier days in this blog, I am on something of a journey of spiritual exploration and looking to some of the pathways people in Eastern faiths use to reach, understand, communicate and simply BE with the deity, whatever or whoever that is for an individual. I have no intention to convert to Hinduism or any other faith, but am find some of these pathways to take me closer to my own God of the Christian Faith. So, it seems fitting that Diwali fireworks are lighting up one of the early nights in our current journey towards William’s re-transplant. Once again, we have joined in the celebrations with a gorgeous Indian feast and, for me, some prayers and  spiritual reading.

After our own Easter and Christmas, Diwali is a one of my favourite religious festivals. A festival of light on the darkest night of the Hindu Lunisolar month of Kartika, which falls between mid October and mid November in our Gregorian Calendar. Like Easter, Diwali moves dates along the lunar month. I’m not going to go into the history or religious significance of the celebrations as these are not things I fully appreciate or understand. I do know that Diwali is all about the celebration of light over dark, knowledge over ignorance, good over evil and hope over despair. I will spend some time this evening and in the coming days thinking about the dark, ignorant, evil areas in my life, and those I worry and despair about how I can shine light, knowledge, goodness and hope into them. And then, of course, how I can be a beacon to others living in the dark in ways I can empathise with. To me, that is what Diwali is all about and that is how I can use and apply it strengthen my own beliefs and faith and get a little bit closer to the way the God of my understanding would want me to be.

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