Friday, 31 October 2014

Day Twenty-One

1. All Soul's Eve Candles

Today, I am three weeks, twenty-one days into this blog, twenty-one days so far waiting for transplant. In that time, sixty-three people have died in the UK waiting for their gift of life because there are not enough of us on that precious donor register. I know many people think that there is no point because our loved ones will be asked about organ donation if a time came about that it became relevant. But that’s not the case. It is a time of great shock and grief and people don’t always know how to respond to the question if loved ones haven’t made it clear or expressed their wish to donate. If they know you want to give the gift of life it is so much easier on them to pass your wishes on. If you are not on the organ donor register, please sign here now. It takes three minutes and costs you nothing.

This week has been an incredible week and a week we have been reminded just how precious each moment on earth is and how quickly life can change. It is kind of fitting that this week ends with All Soul’s or All Hallow’s Eve, a night our ancestors believed that loved ones passed where closest to us. Tonight, I light a candle for Daniel, William’s ‘A’ and all our wonderful donors and for Ubaid, other friends we made and lost along our existing transplant journey and for all those others whose transplant call doesn’t come in time to save them.

2. A bit of a Halloween doodle...

One of those retro photos went round Facebook today of a suede (or turnip) jack-o-lantern like the ones we used to make when we were children and there were few pumpkins in UK. I remember when they first started appearing and were very expensive so we had to make do with our suedes, which were almost impossible to carve and smelled horrible whilst doing so, and when the candle started singing the top. Non the less, the photo got me thinking of Halloweens long past before home made costumes and toffee apples were replaced by complete and ready made fancy dress and Haribos. This really is a doodle and something I probably won't come back to looking at again until next year....

A black bin bag witch
and an old bed sheet ghost
went walking one night
Turnip faces swinging in their hands
winking as their life giving night lights
flickered and twinkled

A black bin bag witch
and an old bed sheet ghost
went walking one night
Toffee covered apples, chocolates and candies
sticky on faces
rattling in loot bags

A black bin bag witch
and an old bed sheet ghost
went walking one night
daring and scaring with tales ever spookier
A twig cracks,
the witch squeals, losing the game

3. Kaleidoscope 

(a reworking of a draft poem I shared earlier)

Myriads of glass beads
frozen in fractals
crimson by green
Indigo with amber
An ordered spectacle
stunning in perfection

But the wind blew time
and the colours burst

Splintered hopes
clashing and spinning with

Jostling for position

in the next alignment

If you are not on the organ donor register, please do click here for more information and to sign up.

If you are enjoying this blog, please help me to keep going and help crowdfund my Three A Day: Waiting project  and get some lovely postcards and an anthology, limited for only those who support and invest in the project.

Thursday, 30 October 2014

Day Twenty

1. The Brightest Green Star in the Sky

Now it’s been made public on twitter and in the media, I can share that on Monday, my beautiful friend, Julie, lost her treasured, sensitive and funny big boy, Daniel. He was only 25! Sadly, Daniel was knocked over crossing a road in the early hours of Sunday morning. Early on Monday morning, I received the devastating text from Julie to say they were waiting for brain stem tests and that she had already spoken to transplant donor co-ordinators. Daniel had shared his wishes to become an organ donor. Not surprising as his little sister, Lottie, who is now three years old,  had a liver transplant shortly after her birth.

Julie is one of those really special people in my life, one of those people you feel so strongly connected with.  I am heart broken for her. My week has been so so surreal and I’ve been in floods of tears for my friend. I never got to meet Daniel as he has left home now, ironically, closer to me in London and I was going to take him for a coffee or some food at some point in time. Sadly that never arrived. It is just incomprehensible that a mother can have two children, one of whom received the life saving gift of organ donation and the other gives the same to six people three years later. As I said in Monday, there are just no words and this was why I couldn’t just come on here and chit chat about what was going on in our lives. Nothing else was going on in our lives in Monday. It just felt like we were going through the motions of a day in between receiving texts from Julie and feeling totally helpless in my attempts at comforting her.

Wills, his sisters and I met Julie and Lottie when were on holiday in Devon. Our friendship came about because of a t-shirt!

Julie, husband Chris and Lottie are involved in an organ donor awareness campaign called I Live I Give, central to which is sending out T-shirts to wear and spread the news about organ donation. We were on a fantastic day out to Cockington, near their home, with the awesome Torbay Holiday Helper’s Network and Wills was wearing his t-shirt. We had had an exciting morning with the blacksmith, glass blower, horse and cart, cream tea, ice-creams (this was Summer 2013, before our big set back this year and Wills was eating). I had popped into a craft shop and Wills decided to sit outside on a bench with his sister Hope and, who should walk past and spot the t-shirt?! I had heard about Lottie as they are under our team at Birmingham Children’s Hospital and I had seen Julie on the facebook group. We’d never met though. It’s a cliche but we really did get on like a house on fire and met up later to watch the Red Arrows over Torquay and drink wine while the children played. Ever since then, we’ve stayed in touch and have shared some big moments on the phone and in person. Lottie had a clinic appointment while we were in at the start of the year and popped in to see us. Wills adores her. So, I really felt their pain and still do!

Of course, when you are on the transplant list and a friend tells you their son is about to donate your mind whirs. When I told Wills, he was really upset for them but immediately asked if Daniel would have that specific antibody match he needs. With the way we met and how our lives had collided it would not have surprised me in the slightest if our story was about to continue in this way. It would have been lovely to have such a wonderful, quirky and charming boy as part of Wills as Wills is so very much the same in many ways. But I didn’t want our life saving gift to come from such a tragedy for such a fantastic friend and I wanted to be able to comfort her and be there for her rather than worrying about William’s first scary and uncertain hours and days. I spent most of Monday in tears every time Julie texted me or I saw a new photo on Facebook and also with my stomach in knots wondering if the phone would ring. When you are on the transplant waiting list, it is very rare that you know that right now, at this moment, an amazing donor is giving his gifts, the co-ordinators are looking at the lists to see who they are for and someone is about to get a call…and could it be you? That with the agony I was feeling for such a good friend. It was the strangest of days. Also seeing first hand the donor’s side of the story. You can imagine but it isn’t the same as experiencing a close friend going through it.

Daniel and Wills don’t share the same blood group. I was able, am able,  to continue to try and help Julie pick up the pieces and keep breathing without being whisked into our own panics. William’s time will come another day. Meanwhile, six people are recovering from receiving Daniel’s precious gift of life and I know Julie and the family are finding some comfort in that. I know they are so proud of him. I am too.

Julie and Chris set up Bright Green Stars to raise awareness of organ donation. On Saturday, just hours before Daniel’s accident, they were busy preparing for a really special Christmas campaign. Wills and I are involved and Julie and I have been in conversation pretty much every day for the last few weeks. It is just so so tragic and unfair that this has happened while they are in the middle of doing so much for organ donation. It’s discombobulating! One day, I hope they can see a glimmer of a reason. One thing is for certain, Daniel is among the biggest and brightest green star of them all. Shine on Dan and beam that light on your family and all those who live on because of your final act on earth.

3. A mantra from my guru

So, yesterday I got to meet Amma, the hugging saint, the guru who appeared to me when I put out a call for one to guide me through this journey in my life. It was an incredible day and I still don’t really feel ready to write about it. I haven’t had the chance yet today to just sit, think, meditate and process everything. It was just the most amazing experience to watch everything that was going on and then to step into it. I heard the most awesome music, and through my new hearing aids on the live music setting for the first time. I will share some of this music with you in the coming days. I read some of the most profound and life changing information I have ever read. I experienced meditation like I have never done before. I hugged a living saint, mahatma, guru who has received accolades from world leaders and the United Nations for her humanitarian work and endless love poured out all over the globe. Amma is amazing. She is more than human. If you watch her hug thousands of people, really hug them with love shining from her eyes, all day and all night for days on end, without showing any signs of flagging….rows and rows of people… It is just incredible. Everyone I spoke to felt something and the love shines from those close to her. I explained our situation and how I may need to leave and, every time I did, I was met with help; promises that someone will get me home if needs be;  suggestions that I stay, leave all my worries behind and get strength from the meditations, blessings and darshan (the hugs) to take me though the journey.

There were thousands and thousands of people in Alexandra Palace, all mucking in volunteering and helping to make the event happen. People would walk round with black boards asking for three people to make samosas, ten people to wash up, twelve men to take boardings down and set up chairs…. There were stalls selling books, CDs, things hand made from Amma’s darshan chair covers and saris, incense, jewellery…. all in aid of her charitable work including hospitals, homes, schools, orphanages… all built from scratch and run by her team. It is mind blowing. I so want to be a part of this. There is so much to share and I will do it bit by bit or it will be long, boring and overwhelming.

I’ll start with yesterday evening and the Devi Bhava. This is a celebration of the Divine Mother, the feminine aspect of God and God’s unconditional love and compassion for all humanity. At the Devi Bhava, Amma gives her darshan as the Divine Mother, in the manner symbolised by the Hindu tradition but open for all traditions to interpret the ceremony and take meaning to fit them. The Devi Bhava was one of the most amazing life experiences for me.

The ceremony starts with Atma Puja, prayers for world peace and honour of the Divine Self that lives in us all. Amma gave a wonderful spiritual talk. It was engaging, entertaining and funny. I wrote as much as I could down so I can go over it again slowly as there was so much guidance for life in it. Then there as a guided meditation and chanting the names of the Divine Mother in Sanskrit. This was moving and felt powerful. Amma blessed water and it was passed to us all. Then, Amma went into a tent behind and came out in the mood of the Divine Mother for darshan.

I had received darsan in the afternoon as a special privilege arranged by one of the Swamis for me as I was too late for a token and in case I had to rush off before the night. But, I couldn’t get a mantra from Amma as she only gives mantras at the Devi Bhava when she takes on the aspect of Divine Mother. I really wanted one at this point in my life, I felt I needed it and it was right for me. I spoke to one of her UK followers about it and he explained that asking for a mantra gives Amma permission to open a spiritual connection with you. By asking for a mantra you are, in effect, inviting Amma to be your guru. If she gives you one, and she usually does, then she has accepted that invitation. Most gurus expect years of study before they will do this but Amma’s philosophy and aims are to accept everyone into her arms and to give mantras to most who ask for them. The mantra is based on your idea of the deity and so will fit your understanding and religious background. Amma does not convert, she stresses her religion is love. The teachings and practises she suggests will enhance any religious faith.

In my afternoon darsan I had taken photos of my children and a friend and her family and has asked Amma for her blessing on them. The evening was all about my spiritual journey and I tried as best is possible for me to clear my mind of William and the transplant and everything worrying me and focus on this. I had a very different experience than the afternoon. Despite the huge hall and having my hearing aids in, I could hardly hear anything other than Amma and the bhajans her monks were sining and praying. I received my darsan and felt a real connection this time. I asked Amma for a mantra and she said yes. I was then taken off for some teaching about mantras and to think about the word I most associate with my understanding of God. I wrote that on a paper and was taken back on stage to queue for the mantra. When it was my turn, I was sat on a chair next to Amma. I stayed a short while and then she lent across from her darsan and whispered my mantra in my ear. After that, a swami gave it to me on a piece of paper in sanskrit and made sure I could pronounce it. He explained the meaning and more. I was then taken down to sit with a wonderful, gentle lady, one of Amma’s UK followers with a small group of people who had received a mantra. This lady explained more about it and taught us a meditation we should do daily based on our mantra. She also explained that we should never show it to anyone or chant where it can be overheard. It is for our heart only and our connection with our guru and the main aspect of God or Divine Being we have chosen to ask her to help us seek, understand and reflect in our own lives. It all felt very deep and very special indeed.

So, I now have a guru. What I read in Eat Pray Love came about. I asked for one and she found me and I have her as a guide for the next part in my spiritual journey. It’s all exciting and perhaps a little overwhelming. I also made new friends yesterday and I can’t wait to see them again and share this journey.

(NB I don't own any of the images of Amma. These are off the web as unofficial photography is not permitted during darshan)

3. A quote to finish 

This was a long old entry but I think you can see the kind of week it’s been. I need an empty day to really put it all together I think. I’ll leave you with one of Amma’s quotes that sums up everything I’ve written today I think;

“Behind all great and unforgettable events is the heart. Love and a selfless attitude underlie all truly great deeds” (Amma)

If you are not on the organ donor register, please do click here for more information and to sign up.

If you are enjoying this blog, please help me to keep going and help crowdfund my Three A Day: Waiting project  and get some lovely postcards and an anthology, limited for only those who support and invest in the project.

Wednesday, 29 October 2014

Day Ninetwen

1. Time Out 

I am spending an incredible day in company of Amma, her followers and others who have flocked to Ally Pally to be here. It is a special and spiritual day for me and with my wonderful friend I have been writing about in the last few days in my heart. There is much to share and my three posts will be up but in the early hours of tomorrow morning. Please come back tonorrow.
Update: I had to stay here later than expected so I am keeping my commitment and promise with three very quick pieces and will write properly tomorrow afternoon, when I have taken all this in. Please bare with me. I needed this very precious time out and spiritual boost. I will make it up to you later today so please come back later this (Thursday) evening for a much more detailed day twenty.

2.  Amazing News

After the devastating news in theast few days, today has been a day of the very best. Before I left home for the day I read that a dear friend in the transplant community had just jad a call for a second lung transplant. This lady is such a wonderful and brave person and mother and was so very very ill living in hospital. I had to keep off facebook today, mainly because it is my day to dig deep inside myself and leave everything else behind for a time but also because I needed to concerve battery just in case our call came. As I was waiting for my Darshan and mantra I checked just to see if my friend's operation was going ahead and was so so excited and delighted to see she was in theatre. So much and strength for her, her family and her precious precoous donor and their family.

3. String of love 

I'll leave you with one of my favourite Amma quotes, as I remember it;

"We are all beads on the same string of love"

I'll be reunited with my laptop very soon and will write properly about everything I experienced today/yesterday.

Be back this evening, please join me.

Tuesday, 28 October 2014

Day Eighteen

1. A Whole New World 

It’s been a surreal and disorientating couple of days. My thoughts and heart are still very much with the friend I wrote about yesterday. The connections between her journey and my own are also occupying a lot of my mind. When something dreadful happens to someone close to you, the ripples are felt strongly and a lot of what I’ve been doing in the last day or two feels very much ‘going through the motions’ as all I want to do is go and give her a huge hug. I will talk more on this blog very soon about my wonderful friend and all of this will make a lot more sense. Not yet though.

Another very disorientating thing going on is my mind is that I can hear! I was diagnosed with sensory neural hearing loss a few months ago and, yesterday, I finally got my hearing aids. My hearing loss is moderate across most of the frequencies with severe on high frequencies. I have probably had a lot of this all my life. My mum always said I was deaf and tried to convince doctors when I was very little but they refused to listen as I could speak. I lip read a lot and have always hated talking on the telephone because it’s just not clear.  I’m sure my hearing has declined over time but a lot of sounds I’m experiencing seem new to me. I’m not sure if I heard them before or if I have just forgotten.

A busy half term may not have been the best time to get hearing aids fitted. They recommend you start off using them in a quiet environment for short periods! It is a strange sensation. At the moment, it sounds like all the sounds around my are being amplified and fed into some radio playing inside my head. My voice sounds like a cross between how voices sounds when you have your fingers in your ears and how it sounds recorded and played back amplified. It isn’t natural sounds but I can hear so so much more. The best thing is that I can hear the children talking, I can hear birds in the town during the day, cracking and rustling of bags and paper, music is fuller and not so dull and flat as it sounded… I keep having to look or ask ‘what that noise was’  because there are some things I don’t recognise at all. It’s all fantastic but it is strange and it kind of messes up the other senses a bit while my brain gets used to it and balances. At the moment, I can hear all the background noises I don’t usually hear more than speech at busy, noisy times, I think because I’m not used to these noises and so my brain is more interested in them than the sounds I recognise. It will take a good three weeks or more for my brain to fully balance all of this but it gets easier the longer I stay in a situation. I was in town today with Wills and was about to take them out when we first got in. By the time we left I had forgotten they were in.

Hearing aid batteries last about ten days and the tubes need changing every three months or so. I have about ten weeks supply of batteries from the hospital but it dawned on me that I need some in my transplant bag. So, I popped into our fantastic friends at Croydon Hearing  today who gave me loads of batteries for my transplant bag, enough for the whole time we are likely to be there and some spare tubes too. They are an amazing charity. I’d be lost without them right now. There is so much to learn.

My main priority now is something to hear the iPhone and the music I play through it. I can’t hear it at all held to my ear so have it on speaker for calls (not ideal when out and about) or through a loop system that requires me to plug it into a box then the box into a neck loop when it rings. There are so many systems, with very varying prices, for connecting with the phone varying from ear hooks, direct input shoes, all singing all dancing (and very expensive) personal loop systems that send almost anything you want to hear direct to your hearing aids…. For now, I’m going to get the cheapest and simplest option of the hooks while I look into things more. In fact, in January this comes out which may well trump everything available now…. Another whole new world has opened up to me, in many more ways than one!

Next week, when the children are back in school, I want to get out of the town into a quiet, country space and just listen to see what sounds are there. I also want to be near water, the seaside… I can’t wait to hear what there is out there that I have missed for so long or maybe never heard before.

2. Mosaic

This is some doodling about an idea I have had for a while now to write a poem about organ donation based on the concept of a mosaic. I'm not sure I have it yet but I'll share where I've got with it. You may well read some completely different ideas around this concept in coming weeks.

The jewels are yours to keep
The emerald memories
Gold and silver threads of time spent well
Red ruby passions
These are your treasures
Hold them deep within your soul

For the mortar that once bound these things
Can not hold them any more

You keep the jewels

But my emeralds are fading
The Gold and silver threads are frayed
My rubies no longer gleam
I can take the clay no longer needed
And make new mosaics where all can shine again

Give me the mortar that once bound your treasures

And keep hold of the jewels

3. Words and Music

Yesterday, I shared one of my songs. Music is really important to me as a writer. The mood, the key, the chords can add so much to words alone in conveying emotion and feeling. When I sit down to the piano I always gravitate to my ‘sussy’ chords (suspended) which tends to give my music a kind of melancholic feel but it’s not always sad in content. That said, I do tend to write more music when I am sad or moved by something. It’s interesting to me that, at the moment, I don’t play at all. I sat at the piano yesterday for the first time in ages, to see how it felt to sing and play a song with this weird ‘amplified in my head’ voice of mine. I played some old songs and not for too long. At the moment I feel that my emotions and feelings about the everything are pretty balanced, or at least they were before yesterday. If I allow myself to indulge in doodling on the piano and getting lost in those sussy chords I know the emotions deep down will become exposed and the balance will crack. So I am staying away from writing music for now. I am writing more words than ever before though and that is so therapeutic. That helps me to maintain balance. It’s strange, I guess we rationalise and work things out in words whereas music is an expression of raw emotion. If I was doing neither I would still not be as balanced as I am right now. I wouldn’t be on this journey either. I wouldn’t just think the thing you read on here. These things come through the  creative thinking, sometimes self-examination and other times pure automatic free thought, that comes through writing.

Monday, 27 October 2014

Day Seventeen

1. Lost For Words

Today I am completely lost for words. All day, my thoughts have been with a very dear friend who has been going through something unimaginable. It is impossible for anything creative through the pain I feel for the family tonight, and how this relates to our own journey. I’m sure I will be coming back to today later on in this blog but, for now, I’ll take you back ten days or so to when I wrote about ago how life changes in a heart beat! It really does you know!

2. No Words

I have no words to say that possibly could comfort you
No words to ease you gently from your pain
There are no words of mine to take you back to yesterday
and fill the world with colour again

Oh to find the words to show you that the day will come
When the dawn will rise with light and warmth once more
But until I find the way to let you know that
I’ll send love and strength from which you can draw

3. Moment in Time

I’ve mentioned before that I write songs. I wasn’t planning on sharing any on here as the idea behind this blog is to write three pieces of new material every day. Today is not a day for writing about me, or even about Wills though. This is a song I wrote the Christmas before last. I wrote it in memory of Riley, William’s first best friend and out room mate when we first arrived into the hospital that would become our ‘Chelsea Pad’ for months on end. Riley became an angel just three days before his first birthday on Christmas Day in 2005. This song is for Riley’s wonderful mummy and daddy but, at the same time, for William’s donor family and the families of all the gorgeous children we have had to say goodbye to on our journey through William’s life.

As this is a writing blog, I’ll share the lyrics and then post a video of when I sung this at William’s fifth transplant anniversary last year. It was an emotional performance rather than a perfect one. Riley’s family where there and I had a photo of him on my keyboard.

You held me once upon a moment in time
Before I had to leave you there
I left you holding on to all that was mine
When you were dreaming
I whispered to you
You never heard the words I’d say

Our lives shone brightly in our moment in time
Before the colours drained away
I left you stranded in a world cold and grey
When you were dreaming
I tried to reach you
You never turned to look my way

But I’m here, deep inside you
I never walked away
And I want you to feel that I am near
When you don’t know how you’ll take your next breath
Or why your heart beats on
It’s me who takes over and makes you carry on

Your eyes are windows to our moment in time
I paint the memories they hold
I’m bringing back the colour
and polishing the shine
I’m travelling with you
In every heart beat
With you each moment in time.

You can here the song here 

Sunday, 26 October 2014

Day Sixteen

1. Dam Germs!

So today I realised why I was feeling so uninspired and struggling to write on here yesterday as I woke with a yukky winter lurgy. As all mothers to children like Wills will know, the first thing I thought about was him. I am trying so hard to protect him from bugs and germs at the moment, and making sure all of us stay away from anyone sick. The last thing I want is for that phone to ring and for him not to be able to receive a potential gift because he has a fever. This, of course, is the worst time of year for that. I doubt a cold would stop his transplant but if it caused a fever or nasty chest infection it could. Thankfully, despite being immunosuppressed, Wills isn’t too susceptible to coming down with bad colds. It’s the stomach bugs that have been his nemesis.

The second thing that comes to mind is that if we got the call I’d have to stay away from him as he will be so highly immunosuppressed over the initial days and weeks. In fact, for the first six months will need to stay isolated from big crowds and busy social situations. I may get away with being able to stay with him but with a surgical mask but, in an ideal world, we both need to stay fit and well this winter. It’s ironic that I added a footnote to his Halloween party invitations to say that no one should come with a cold….only to go down with a heavy myself later that day. I’m beating it up as best I can and hoping it’s gone in a few days. Not least, because I am going to Amma’s Darshan on Wednesday and want to be well for that as I’ll be going to the late night session. It’s something I’m really looking forward to and have a feeling it is going to be a very moving spiritual encounter for me. Something life changing. I’m spending time each day now preparing myself for me to receive whatever it is I find there as best I can by reading, thinking, meditating and opening my mind and my heart. I’m looking forward to sharing more with you about this later in the week.

2. Becky Blue

I spent sometime this afternoon looking through pictures and seeing if anything inspired me to write. This character sprung into my mind with a pretty strong voice. I quite like her and she intrigues me. I think I'll keep going with her. She can be a friend when I need to escape the very autobiographical world of 'Something Precious Inside.'

I read once that you know you’re in love when you find someone who completes you and you can’t be whole without them.  Joshua doesn’t just complete me, he re-created me. Joshua calls me Becky Blue. He says it’s because of my eyes.
“Deep Azure, like the oceans that surround Jamaica. Piercing!” Joshua says.
“Your eyes penetrate deep into my soul. They move me. When you look at me you touch me in places no one else has ever been or seen.” I’m not sure that I have seen inside Joshua’s soul. I’m not sure that’s even possible but it sounded good when he said that. It made me feel special. Like I had some kind of magical power. It made me feel like I was more than just Rebecca Cartwright. It made me feel like Becky Blue.  So I started to hang around with Joshua more often, then as often as possible.

But no one has seen Joshua since last Wednesday. He hasn’t been to school. He wasn’t at the football club on Tuesday. He hasn’t even been to church. Every Sunday morning, without fail, he’ll be there. Even when the party was so good on Saturday night he hadn’t been to bed at all. He’d go home, freshen up and be there looking like he’d been sleeping sweet all night. Joshua said he had to go because his parents expected him to and because he needed to  say sorry to God and to his mum for a week load of sins.
“I wipe that slate clean every week,” he said. And that meant he got to scribble on a nice clean surface on the way to school on Monday morning. But not today. No one has seen Joshua since last Wednesday. Not even me and I don’t know how much longer it will be before I have to be Rebecca Cartwright forever

Dad always calls me Rebecca. In sixteen years he’s never once nicknamed me or shortened my name. Not when he called me in when I was playing with my dolls in the garden. Not know when he texts to find out where I am and when I’ll be home. Always in full. Always Rebecca.  It’s nearly six so he’ll be calling me in any moment. In any moment he’ll knock on the door and ask if he can come in to talk about how my essay is going and what I fancy for tea. He’s OK today. Today, he’s thinking how he can help me get the grades I need to get into sixth form. Today he wants to ask me about the A Level subjects I’ll be choosing. Today, my dad believes I have a future instead of being convinced we’re all about to die imminently in a terrorist attack or from bird flu or something. Dad’s been OK for a while. Maybe he’s better now. He hasn’t worked on the shelter for nearly two weeks. He hasn’t been down there since last Wednesday. Since the day that Joshua disappeared.

3.  Battling Nagging Thoughts! 

Much as I am looking forward to Wednesday, I also really fear it. I have just spent the last hour, an hour when I could have been reading, resting the cold away or, if anything else, making pumpkin pie, instead brooding on every single possible scenario that could happen when I am on the other side of London to William. I have been sitting with my pad, waiting for some writing inspiration to cut through the snot fuelled fog in my head, and all I have is a margin (because I was fully intending on filling the main lines) filled with train details, night bus routes and the times I can get back the quickest and easiest…. and then my brain started panicking and brooding about the times in the early night, when I may still be away, when it will be hard for me to get back. I am going to Amma’s last session in London. It’s an evening session, starting at seven with Puja, or prayers, followed by mediation and late Darshan, where she gives those healing hugs of hers. This is followed by Devi Bhava, a celebration of prayer for world peace. I would really like to do it all, spend a whole night in meditation, prayer and spiritual self discovery.

I have written before that Amma welcomes all religions to her sessions and her Ashram. I have been reading more about her in the last week and about Christian leaders who have met her, experienced her Darshan and found a deeper understanding of Christ and God, as well as their own place and calling. Some have gone on to become her devotees and spend time in her Ashram, never losing or chaining their own faith but gaining a deeper experience of being in the presence of God.  If I’m going to go and experience this for myself I would like to immerse myself in it and see what it teaches me and where it leads me. A kind of ‘mini Ashram.’ But there is this nagging feeling that that call will come right slap bang in the middle, at the hardest time to get home. There are only five hours that are hard. Up until 11.30pm is easy and after 4.30am is equally easy. It’s not even impossible in the five hours between. At worst it would take two hours to get home instead of one. Still, I have almost convinced myself not to go but then I remembered back to William’s last transplant call. He was on the table in an emergency operation and there was a lot of discussion between our London and Birmingham teams before I was even told. Then an ambulance crew turned up to the recovery room, where he was still unconscious but the doctors decided to wake him first. The crew left and no one came back for over two hours. So, although we have to get there immediately, there is some wriggle room for me to be able to get home. They tell you to carry on with life, not sit by the phone at home all day. But I know this will bother me. I guess this is one good example of why this whole experience will be so good for me. Tp learn to meditate properly and get rid of those ‘what if..what if….s’

If you are not on the organ donor register, please do click here for more information and to sign up.

If you are enjoying this blog, please help me to keep going and help crowdfund my Three A Day: Waiting project  and get some lovely postcards and an anthology, limited for only those who support and invest in the project.

Saturday, 25 October 2014

Day Fifteen

1. Party On

I think this is the first day I am really struggling to get into the zone to write. Not surprising at all as it was one of those nights with several leaking stoma bags and bag changes. Despite this, I still had to get up relatively early to tidy and clean the house before decorating it and getting Wills ready for his Halloween Party. When Wills and I had to sit down and talk about the situation he is in while waiting for his re-transplant and the potential risks of having it, our team suggested that we made a wish list of things he wanted to to while we are waiting. One of the things we decided to do was to have a party at every excuse there is for one. So, today, we had a Halloween Party.

I know Halloween is a bit of a controversial festival, especially among religious and spiritual people. But I love it. I think it is a time so rich in tradition and folklore and a time where pagan and celtic ideas and customs have blended with religious ones in so many creative ways. A lot of things that critics believe are in celebration of evil actually originate from practises to ward it away, or to celebrate the souls of loved ones. Take the Jack-O-Lanterns for example. The Celts lit fires in their homes to guide the souls of loved ones back during their earthly visits on All Souls Night, or All Hallows Eve. Dressing up also comes from The Celts as they believed ghosts walked the earth on All Hallows Eve and, if they dressed as one themselves, they wouldn’t be noticed by any whose company they didn’t wish to keep. Trick or treat and partying comes from the Christian tradition of sharing and giving out soul cakes, spicy bread buns like hot cross buns without the fruit or cross.
There is so so much more too. I think it’s a shame these traditions are being lost as, rather than a time full of plastic tack and over priced novelty sweets, Halloween could and should, be a time full of delicious traditional practises around candles, bonfires, food and celebration of the people we loved and who no longer live with us here.

This year is all about doing it William’s way though and that involved a party today and trick or treating with some friends on Friday. We will talk about the old traditions though and I think I may well slip some soul cakes into the celebrations. Today, we dressed up, played games, shared scary stories and carved pumpkins. Aside from a bowel of sweets and a few crisps we didn’t have any food as it’s seemed a bit cruel to William to fill a table with witch finger hot dogs, worms in jelly, spider web cakes and other such children’s party treats only for him to have to sit and watch them. It’s torture for him.  Next year we’ll have a huge Halloween Feast!

2. Are We Nearly There Yet 

Wills is a brave little solider and, unless he is in agony,  hates letting me know when he is feeling rough. He can be as pale as pale and rubbing his tummy but will say he's fine, then later say he's been feeling bad all day. He'll fall asleep mid sentence and deny being tired, in fact, he'll deny falling asleep and say instead he was 'deep in thought.'  I see the trend for feeling a bit yukky, looking shattered and being 'deep in thought,' is a downward spiral at the moment. Gradual thankfully but enough to see a difference over the weeks. Today, he had had enough after about an hour of the party. The only clue I get from Wills about how he is experiencing this himself is that he has started asking me almost every night at bed time, 'When will we get the call?' Of course, I can't answer and that led me to this doodle of a rough poem;

Are we nearly there yet?
I’ve no idea my son.
But you’re the driver mummy!
Not now my little one.

How much longer is it?
I haven’t got a clue.
But you’re the one who’s taking me
If only that were true.

Do you even know where we’re going?
I do, but I don’t know the way.
We’re lost then?
No, not lost my child
we will get there, one day.

3. Miracles don't happen anymore?

This is a 'found poem' I wrote at the time the footballer, Fabrice Muamba, died on the pitch and was revived. A found poem is where you organise existing material into a poem or, in this case, more of a piece of prose. I had forgotten about this and found it today so I tidied it up a bit. The sources from from The Bible (in normal font)  and Twitter (in italics).

Now a certain man was ill, Lazarus of Bethany, the village of Mary and her sister Martha. Mary was the one who anointed the Lord with perfume and wiped his feet with her hair, her brother Lazarus was ill.

On our way to London after good training session. #COYW

Just reach white hart lane. #COYW lets have it now.

Muamba collapsed face down with no-one near him.
He's just been stretchered into the tunnel for  more private resuscitation. 
Match abandoned.

ESPN tunnel reporter says that many of the players have tears in their eyes, and that Muamba wasn't breathing when he was stretchered off.

So the sisters sent a message to Jesus. Lord, he who you love is ill.

Please please please let Fabrice Muamba make it. Praying! #pray4Muamba

But when Jesus heard it, he said, ‘This illness does not lead to death; rather it is for God’s glory, so that the Son of God may be glorified through it.’

God is in control. Please keep @fmuamba in ur prayers xx

He said to His disciples, ‘Our friend Lazarus has fallen asleep, but I am going there
to waken him. Then Jesus told them plainly, ‘Lazarus is dead. But let us go to him.

A joint statement issued by the hospital & Bolton on Sunday evening said "Fabrice Muamba remains in a critical condition in intensive care”

When Jesus arrived, He found that Lazarus had already been in the tomb for four days. Martha said to Jesus, ‘Lord, if you had been here, my brother would not have died. But even now I know that God will give you whatever you ask of Him. Jesus said to her, Your brother will rise again. I am the resurrection and the life. Those who believe in me, even though they die, will live. Do you believe in this? She said, ‘Yes Lord.’

Fabrice WILL!! Pull through because God is good. Love u so much @fmuamba keep strong we're praying for u honey xx

Jesus said, ‘Take away the stone. Lazarus, come out!’ The dead man came out.

Fabrice Muamba's heart is now beating without medication and his arms & legs have shown movement" Great news! #Pray4muamba.

Please keep praying for @fmuamba it’s really helping I can feel it xx Muamba able to recognise family members and respond to question.

Fabrice has felt every single prayer guys you've been INCREDIBLE!!!. Thank u all so so much I love and appreciate u all. Thank u again xx

All your prayers are working people thank u so so much. Every prayer makes him stronger. To God be the glory.

Did I not tell you that, if you believed, you would see the Glory of God?

"If I was ever going to use term miraculous it could be used here". Spurs fan & cardiologist on Fabrice Muamba's recovery.” Great news!

God’s amazing!

Muamba 'Talking And Laughing' In Hospital.

"Dead for 78 minutes" (Muamba). Absolutely extraordinary.
Fabrice Muamba on the mend but 'in effect, he was dead' says doctor.

And Jesus looked upwards and said, ‘Father, I thank you for having heard me.’

Faith can move mountains.

Hashtag #ThankYouGodAlways now trending worldwide.

Highly blessed and favoured children of God always have faith. Thank u 4 ur prayers, love and support.

#PrayForMuamba pray for other people too, basically pray more yep, that's it, just pray 


A found poem taken from John 11 vs-1-45 (abridged and slightly rearranged) and tweets taken from the following Twitter feeds between March 17th and 21st 2012; @jrmuamba @SkySports, @Tottenham_Live, @GeoffShreeves, @GeorgeElokobi, @ShuanaMuamba @SkySportsNews @FourFourTwo @SuperSportBlitz @SkyNews @ @iansabbath @BearGrylls @Carrima, @Telegraph, @IndiaKnight @Guardiannews @VickyBeeching

If you are not on the organ donor register, please do click here for more information and to sign up.

If you are enjoying this blog, please help me to keep going and help crowdfund my Three A Day: Waiting project  and get some lovely postcards and an anthology, limited for only those who support and invest in the project.

Friday, 24 October 2014

Day Fourteen

1. My Inspiration 

This is the beautiful Kourtney Crystal. Kourtney lives thousands of miles away, across the seas in LA, California. Until yesterday, I had never heart of her. Today, she is my biggest inspiration! You see, Kourtney had the exact same second transplant that William is now waiting for, a small bowel, colon, liver and pancreas. That was three years ago and look how amazing and beautiful she is. Kourtney is twelve, two years older than Wills and dreams of coming to London one day to see Big Ben as she loves Peter Pan. William dreams of going to Florida to Disney World because he loves Pirates of the Caribbean and the ride that inspired the move is right there. Two children who dream of travelling to each other’s countries because of pirate inspired movies. And soon I hope and believe, two children who will have something even bigger in common.

Yesterday, our amazing specialist at Birmingham Children’s Hospital emailed me, as she was walking out of the door to a holiday, to give me some information and contacts for children who have come through this re-transplant with the teams our team work closely with in the US. Meanwhile, a friend, J, whose beautiful daughter, M, who lives in new Zealand but had her intestinal transplant in the US, shared the piece in our local paper this week and asked if anyone who has had this re-transplant could get in touch. So far, we know of three children through Facebook and two from our team’s colleagues in the US and are making new friends with some. I can’t begin to say what a weight it is off my back, not describe the smile on my face today.

Our Birmingham small bowel transplant family are a small and tight one and those who have been around in it long enough to remember will know the children who sadly became angels after their second transplants. This means that whenever I talk about it they can only share with me the stories they know, always finishing with something along the lines of ‘the team have advanced loads since then, things have come on, Wills will do great!’ which is true and reassuring. But, if I called any of these people up or messaged them online after his transplant to say, ‘hey, we have hit this problem or that problem,’ I know the stories of other children who had hit the same would be hard to hear. Now, we have new friends to ask who will be able to say something more along the lines of, ’that’s tough, but we did too and they did x,y,z, it was scary, it was hard but we came through.’ This means so, so much.

It is fitting that Kourtney is pictured standing here in front of the word ‘inspire.’ She is inspiring me the whole time now.  I will be printing that picture and putting it on the notice board and also into my rescue box. I hope there will soon be others there with this one too.

2.  Three A Day 

We are now at the end of the second week of this blog. In the last for teen days, forty-two people in the UK have died waiting for organ transplants because there are not enough donors. I wrote and shared a poem a few days ago called,  A Part of Me, about the wonderful, positive things that come from donating organs. Today, I tried to write about the impact of the lack of awareness there is towards organ donation. This is a very rough and drafty idea of a poem at the moment and needs more work...

Three mother’s hearts are broken
Three homes have fallen still and silent
Three groups of friends are holding each other up
Three children have been told their daddy will never come home again
Three of the biggest hope’s put out to the world this morning have been smothered
Three lights burning with endless of possibilities snuffed into darkness
Three medical teams are feeling helpless
Three precious lives are over

Three people could have changed all of this
if only they had known

3.  The Key

I packed two pairs of pyjamas, the softest I could find and a couple of sizes bigger than you to be extra comfy over your wounds.
I packed your slippers for your first tentative steps out of bed
I packed your cuddly friends for bedtime
I packed your favourite books and films to take you on adventures away from your pain
I packed empty drawing books and note books ready to be filled with your new life
and the brightest felt tips I could find to make sure it is as vibrant as can be
I packed all of my energy to boost you when recovery seems unachievable
I packed my biggest promises that each day will get a little bit easier
I packed my deepest cuddles for the days that hurt the most
I packed all the love that would fit

I packed it all into a suitcase and put it out on the hall
ready for someone to gift us they key that will open it

(another rough and crafty idea of a poem)

If you are not on the organ donor register, please do click here for more information and to sign up.

If you are enjoying this blog, please help me to keep going and help crowdfund my Three A Day: Waiting project  and get some lovely postcards and an anthology, limited for only those who support and invest in the project.

Thursday, 23 October 2014

Day Thirteen

1. Pause and Just Be

Today has been a really lazy day but obviously one I needed to have. I am talking all the time about this period of life as a metaphorical journey and also a journey of self-discovery for me. We’re coming up to two weeks in now and it was clearly time to take a rest. I woke up feeling yukky and shattered and decided to read for a bit while I was waiting for our weekly TPN delivery and then treat myself to a dose. That dose ended at 1.30pm!

This reminded me of one of those quotes that are shared on Facebook:

Some days are all about your dreams, hopes and visions for the future

But there are some days where life is just about putting one foot in front of the other

And that is OK.

I have modified it a little bit and I think I am going to write it out and stick it on my notice board and into my rescue box:

Some days are all about your dreams, hopes and visions for the future

But there are some days where you need to just pause and be

And that is OK

While I was having one of those 'pause and just be' days, Wills was busy at school, following up his newspaper piece yesterday by addressing everyone’s questions in a speech to his class all about his transplant, TPN and what it is like waiting for another transplant. He was open and honest and even got a bit emotional when he talked about how we had to give our beloved golden retriever, Oli, to another family because of our long hospitalisations and infection risks. He was given a cuddly dog by one of his wonderful teachers which is also called Oli and has gone to bed with him. The best thing about this Oli is that he can come with us to hospital.

2. New Life

Yesterday, I got to meet this beautiful little lady and have a lovely lunch and catch up with her parents.

They are an absolutely wonderful family and it was a fantastic to spend time talking about new life and all the endless hopes and possibilities that brings.  Hayley became pregnant at around the time Wills became unwell as the start of the year so we have been sharing parallel, but very different journeys. In fact, at the time we were waiting for the difficult and complicated decision to be made about whether or not the time was right for Wills to be re-listed for transplant, follows by what organs he should be listed for, Hayley and Matt were waiting for Beatrice to make her arrival into the world. She was far too cosy in the womb and so that day came a good while after her due date. Hayley and I often touched base on Facebook and wondered who would be first to get what we were waiting for.

As we were talking, we discovered our journeys were not that different at all really. I think waiting for a transplant is a lot like being pregnant. You have a packed suitcase in the hallway which, through not needed all the way through pregnancy, is very much the case in the last few weeks. Both, of course, are journeys towards new life and both have some fears and uncertainties, especially for the first time mum. In both, you spend a lot of time looking forward to the life that is ahead and all the wonderful things you will do. I think another key thing is that you never really get the journey out of your mind. I found it was the same in all my pregnancies and waiting for transplant both these times. Sure, I can get on with other things and I am not always thinking about the phone ringing and about what will happen when it does, but it is certainly there somewhere lurking in my mind all the time, just as my endless hopes and possibilities for my new baby, along with the fears about the birth itself.

3. Eat Pray Love - the end, and start of the journey 

I have finished Eat Pray Love and I’m a bit gutted to tell the truth. I feel like I have lost a friend who was on this journey with me, advising me on how to bolster myself with pleasurable treats, introducing me to new ideas about Spirituality and feeling the presence of my God, helping me in finding me a guru of my own and, in the final chapter set in Bali, helping me with some ideas on how to balance all of this. It is funny that I have had this book on my shelf and kindle for so long but never read it. It feels like I was meant to read it now. Had I have read it at any other time it would simply have been a book I enjoyed, was marginally inspired by and would have clocked some of the ideas at the back of my brain to think about again another time….and probably never got around to them a second time. Instead, I have so many ideas that I know I will share and refer to many times here in the coming weeks and months, if our journey takes that long.

In one of closing chapters, Elizabeth Gilbert looks back in her time in lone, silent retreat on a Balinese beach at a difficult time in her life, a year before she started the year long journey of healing and self-discovery. There was a lot for me in this chapter and I’ll leave some for another day. She tells how a central yogic idea is that the pain in human life is, for the most part, caused by words.

“I’m stressed, I’m scared, I’m lonely…” All of these become mantras and become a monument to them. This idea takes me right back to the night of ‘tantrums, tears and brandy,’ exactly two weeks ago tonight. My friend is a wise to these kind of ideas and was telling me just that,

“You keep saying you’re stressed, you keep saying this is hard for you….well, guess what, you keep saying these things and that is exactly what you are going to keep feeling. You carry on watching things like Eastenders and surrounding yourself in negativity and what can you expect to feel and experience? Surround yourself with encouraging and inspirational books and films and things that will make you feel positive.”

This is what caused hurt cross words, “What do you know about what I’m going through? How can you say these things, why would you say this to me tonight of all nights when I’m feeling so crap about everything.” I felt let down by one of my best friends, especially as he then left and made me feel as though he had just abandoned me feeling as low as I ever feel really. If you read my earlier account of this story, you will know that he did return…with brandy and we had a good long chat long into the night.

That night for me, is a bit like the night when Elizabeth Gilbert falls to the floor in tears and asks God to help her in her deepest hour of despair. But I can now see, that it was also like her retreat on the beach.  She talks of how the yogis say we have to stop talking, stop those mantras to be able to strip away the power of those words. I was alone in my room and stopped talking. I was crying so much I felt I was suffocating but it wasn’t the tears suffocating me, it was the words. On Elizabeth’s beach, she talked to God in meditation and He asked her, “What gives you sorrow?” and she answered. Then, “What gives you grief, anger, shame” To each question, she poured out her response. It was the same for me, in my silent tears I poured out to myself all the things I was stressed about, scared about, feeling lonely in… and then, I stopped crying and thought about what my friend had said. I searched my bookshelf for the kind of books he suggested, and found Eat Pray Love. I began reading it and got to the bathroom scene, describing just how I felt and have shared Elizabeth’s journey ever since, jotting down ideas, thoughts and ideas in a notebook as I go. We are parting company now but I have so much to take with me. I have a guidebook really, and a small pile and long list of new books to read.

As for those mantras, well the yogis say that we make our own joy too. I am creating replacement mantras; 'It's going to be OK, we can do this, this is the right thing to do...' And guess what, it works! I'm also learning meditation, yoga and how to find and enjoy silence (which I've avoided all my life, always falling to sleep with something on) - but that's for another day.

If you are enjoying this blog, please help me to keep going and help crowdfund my Three A Day: Waiting project  and get some lovely postcards and an anthology, limited for only those who support and invest in the project.

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.

If you are enjoying this blog, please help me to keep going and help crowdfund my Three A Day: Waiting project  and get some lovely postcards and an anthology, limited for only those who support and invest in the project.

Tuesday, 21 October 2014

Day Eleven

1. A Part of Me

I give to you my heart
Please, handle it with care
It never got the chance to break
Though had much love to share

To you, I give my lungs
Air streamed deeply, never a wheeze
Now you’ll be able to run and jump and sing
Breathing at last with ease

I’m giving you my liver
I liked my coke flavoured with rum
So I know it is a good one
But please don’t tell my mum!

I give both of you a kidney
They kept me going strong
In miles and miles of training
and gold in the half marathon

To you, I give intestines
So at last you’ll be able to eat
I bet you can’t wait to savour
Vanilla was my favourite treat

I’m giving to you my pancreas
I had a very sweet tooth
and was pushing it right to the limit I think
Be thankful it’s still in it’s youth

I’m giving you all something precious
Things I’ve had all my life, parts of me
So now, I’ll always be part of you
In every new moment you see

I don't normally write in rhyme but, when I do, the poems flow from the pen quickly. They tend to be quite light poems, not very deep. Like everything on here, that poem needs a bit of work but it is a special one to me.

2. In The Tail Of Hurricane Gonzalo 

Leaves flitter and glide
Glinting gold against ashen grey storm clouds
Stars shooting from the sunny side of the street
Is it wrong to wish on dead matter?

Something I wrote when I was looking out of my window this morning.

3. Be careful what you wish for!

In April, shortly after Wills and I had come out of our long hospital stay and were trying to catch up with what 2014 had bought for the rest of the world, we went to a celebration of 25 years of our amazing liver unit at Birmingham Children’s Hospital and 20 years of intestinal transplants within the unit. It was a wonderful celebration of the most awesome team of people you could ever meet. We arrived the evening before and spent some time chatting in the hotel bar with other intestinal transplant families. I noticed, as I have done before, that the strapping big, healthy teenagers, some of whom had their transplants as infants, seemed to be mostly combined liver and bowel transplant recipients, while most of the the children I know who have struggled since their transplant, at least with rejection, malabsorption and other bowel function related issues, seem to be isolated bowel recipients.

When we were told that it was time to think about re-transplant a few weeks later, I asked if  there was any truth in my observation and if we could think about a combined transplant for William this time if there was any substance at all to my theory. I was told that I was right, there did seem to be a bit of a pattern, in some cases at least, to suggest combined transplant recipients did better in the long term, but only after a much more challenging initial couple of years that isolated transplant recipients and you have to get through those first. And, although most do, we have lost some beautiful angels along the way. The consultant told me that it was only of there were specific antibodies that a liver would help. I didn’t completely hear or understand what she said but said to myself, ‘then I hope Wills has those antibodies!’

At that time, I didn’t realise that liver and bowel combined re-transplants had not yet been successful within our team and so within the UK (Kings, London now do intestinal transplants but, until 2008, it was only Birmingham). I didn’t fully understand the added risk of double transplants. I just saw a group of children struggling and big, healthy looking teenagers, some at 18 on the verge of adulthood. In my mind, if Wills was going to go through all of this again I wanted it to last as long as possible, even if that meant accepting some additional risk initially.

At the British Transplant Games in August, in fact in the days directly leading up to our admission for re-transplant assessment, I spoke about it with some of the other mums, one of whom has a strapping, healthy looking teenager who had an isolated bowel which reassured me.

And then we got to the assessment and we talked things through….and I felt relieved that Wills was only needing an isolated bowel re-transplant. And then, right at the end of the week, some blood results came back… and William had the donor specific antibodies! When we were talking about liver and bowel re-transplants and our wonderful specialist nurse was explaining it, she said; “We will have a first liver and bowel re-transplant! It will happen!” I hear her say that almost every day. It has almost become a mantra. At first, a part of me felt I had ‘tempted fate’ by wishing it on Wills but now I prefer to think that, if I did put it out there, if I did ask the universe for him to have a combined transplant because of my hunch and my observations, then it was because that will be the case for him. His beautiful first donor gave him an organ that kept him alive when we were so, so close to losing him. Her gift say him grow from a small child into the funny, quirky, intelligent and sensitive young lad he is now. His new donor will give gifts that will see this lad grow up into a young man.

It’s true, you do have to be careful what you wish for, what you ask the universe for but I believe…and I really do believe, that this time, the wish will come true.

If you are enjoying this blog, please help me to keep going and help crowdfund my Three A Day: Waiting project  and get some lovely postcards and an anthology, limited for only those who support and invest in the project.

Monday, 20 October 2014

Day Ten

1. In Parallel

His eyes stare at her through a miasma
His words reach her muffled through the fog
Her chair is quicksand
Nothing is solid anymore
Nothing is real
'have you considered'
He asks her
She could save
He explains
Will you?

His eyes dance with light as he smiles at me
His word bounce almost in song
The floor is quicksand
Nothing is solid anymore
Nothing is real
We have found one
He tells me
He is saved
He exclaims
She said yes

2. When the going gets tough, the tough get wise

One of the hardest things for me personally in the ten years since William came into our lives, simultaneously blessing them and turning them upside down, has been the seemingly constant dead ends and re-starts with things. At the time William was born, I had a pretty senior job in the Prison Service, as Area Psychologist for London and in charge of all the psychology in the London jails and probation services. It was an exciting job and a very interesting experience in life, but the twenty-four hour/ seven days a week on call pager and the long hours were not conducive to looking after any baby, let alone one with medical needs too complex to expect the best of childminders to cope with. Full time work eroded to part time, to part time working from home until even a working from home job with any kind of regular working hour expectation was impossible.  We spent 80% of the first four years of William’s life in hospital and just keeping the family together was about the best I could manage.

After William’s first transplant I sat down and thought what it was that I really wanted to do in life. The only thing I had carried on doing since he was born was writing so I decided that that was what I would do. I would be a writer. I was a writer! I did a four week magazine pitching course and soon had my first commission from a monthly glossy mag. Others followed and I was soon doing OK with writing. As time went on, I began to feel confident in stepping out and creating new projects. It’s funny but almost every time I did, William had one of the set backs that saw us back up in Birmingham and back on TPN for a couple of months. These tended to be a year to eighteen months apart so I guess it took that long for me to regain the confidence to try again.

Last year was one of William’s best years since transplant, well it was in terms of hospitalisations anyway. His absorption was a bit sluggish and we had some backwards steps in terms of his reliance on overnight tube feed but we had not a single emergency hospital admission! This was great for me. I got back into singing, writing songs and performing on the Croydon open mic scene, I had meetings, got excited and started new projects, the main one being the HeBeSheBeWeBe Theatre Group, designed to be fully accessible for people with mental health and other challenges that may prevent them from joining a theatre company. As I was writing the plans I suddenly had such a strong conviction that William would be sick again that I almost heard my voice saying it. I think I actually may well have said it out loud, totally subconsciously. Sure enough, I dashed up from our local hospital for our first open workshop. That was the start of the chapter that has brought us back to re-transplant.

When we came home on TPN, I was so convinced it would be temporary that I even made plans for an inclusive youth theatre to open in September. I rushed around, going to meetings, making more and more plans… much to the bewilderment of that wise friend of mine, the one from the ‘tantrum, tears and brandy night!’ He would constantly ask what on earth I was doing when things were so clearly up in the air with Wills. I think I was surfing on waves of denial and white horses of blind optimism. My wise friend kept saying to me “Do what you can do form a lap top anywhere. Write! It’s what you’re good at and what you are here to do!”

It’s funny, due to many situations, not just my own, the theatre company has also seen some false starts and changes of plan but, guess what, I have written two whole plays since the summer. Sometimes it takes the challenges in life, and I mean the really big ones, to force us to stop, look at things and realise that we can spend so much time running around, making plans, trying to be all things to all people that we miss what we really should be doing, we miss our own USP.

Since I started this blog, ten days ago, I have written 19 648 words  (to exactly this point)  on this blog alone, as well as work on the novel apart from the extracts I have shared here. Right now, I don’t have the energy - physically, mentally or spiritually to do anymore than the things I have to do, the things I was put here to do and, rather than feel I’m running around failing and feeling disappointed at yet more false starts, I actually feel more complete and at peace with myself than ever before. I get up in the morning, get the children off to school, make my coffee and can’t wait to write. When I’ve done William’s TPN and drugs and everyone is in bed again, I’m here again immediately. I have called myself a writer for all these years but at last I have finally stopped talking about it, gathering books, tools and notes and, for the most time,  procrastinating. I am  doing it in every minute I possibly can and with a passion I have never had for it before, much as I have always loved it. I think I should write myself a huge sign above my bed for when we come out at the other side to remind myself of this!

3. Practise 

Run and play over the wires
Walk their tightrope as each moment requires
Caress and tease in discord of suspension
Direct every second of your attention
To the rythmn and cadences you are locating
And revel in the primordial sounds you're creating

(a very drafty little play. I rarely write in rhyme so was having a bit of fun)

If you are enjoying this blog, please help me to keep going and help crowdfund my Three A Day: Waiting project  and get some lovely postcards and an anthology, limited for only those who support and invest in the project.

Sunday, 19 October 2014

Day Nine

1. Amma's Embrace

Today, we were up early tidying the house, and ourselves, for a photo shoot at 9am to go with a local paper feature about William being a nominee for Child of Courage in the upcoming Croydon Champions awards. Last year he was shortlisted as a finalist and we were invited to the awards ceremony. There are many brave children in the world. How on earth do you judge what one child is going through as more courageous to another? And so, I don’t know if we will be invited back to the awards this year but he has been nominated and so is feeling pretty special about that. Sundays are always a busy day. I have rehearsals for the play I have written and am directing with my awesome HeBeSheBeWeBe Theatre Company but, between the photo, washing, homework, cooking, playing with Wills and rehearsing, I have been able to take some time to start reading about Amma, my Guru. There, I’ve said it! At least for the time being, for this journey, Amma is my spiritual leader and guide.

Amritanadaymayi (Amritapuri) was born in 1953, the third of seven children born to a family of fishermen in Kerala, Indian. She was born into a Hindu tradition and began to pray, sing and make up songs to her favourite god, Krishna, at an early age. When she was just nine, Amriapuri left school to look after her younger siblings and take on full time domestic duties. One of her roles was to gather scraps of food from neighbours for the family’s live stock. Doing this, her eyes were opened to the plight of her poorer neighbours and she began taking food and clothing from her own home to give to them. She was scolded for this as her own family did not have much, but Amma felt deeply the intensity of suffering and poverty she found in others. She began embracing people spontaneously to comfort them. She says;
“I don’t see if it is a man or a woman. I don’t see anyone different to my own self. A continuous stream of love flows from me to all of creation. This is my inborn nature. The duty of a doctor is to treat patients. In the same way, my duty is to console all who are suffering.”

Amma, meaning mother, has since embraced over 33 million people all over the globe though her Darshan. At her Ashram in India and events all over the world, Amma shares her teachings, meditations, chanting and offers Darshan to everyone who comes into her presence.  In the ancient Sanskrit, Darshan means ‘to see.’ In the Hindu tradition, it refers to seeing the sacred. I can imagine that, through the compassion and love Amma gives in her embraces, those who receive can behold the image of their own god or deity through her eyes. Amma says she is not of any religion or of no religion. She makes herself available to everyone who wants to meet her in person to comfort, console and uplift any individual who comes to her, through her heart felt, tender embraces in an act of unconditional love and acceptance of all mankind. She asks that no one changes their own faith or believes but seeks to gently guide each individual into a deeper understanding and experience of their own true self.

I have been reading accounts of journalists who have gone to Amma’s events, purely to report on the enigma who attracts thousands of people daily to her events and to live or stay at her Ashram. Every single one of these journalists experienced strong physical, emotional and spiritual feelings or changes during and after her embrace.

Amma accepts the spiritual practices and prayers of all religions as various systems for the  purifying the mind. As in all Hindu traditions, meditation and karma yoga, selfless service are at the centre of her teaching, as are cultivating divine qualities such as compassion, patience, forgiveness and self control. All of this makes us fit to assimilate the ultimate truth, that one is not the limited body and mind. And here, you can add what we are above the limited body and mind to fit your own religious tradition and system of beliefs. For Amma, it is the consciousness that serves as the non-dual substratum of the universe. Once you have this, you have what Amma refers to as jivanmukti, liberation while alive - a state of perfect awareness and equanimity, which can be experienced here and now in this world. With jivanmukti, you can merge with the infinite.

I know that these qualities, and following a pathway to jivanmukti, will be an invaluable, in fact essential road to take on the journey I am on right now. Jivanmukti within my own Christian faith certainly something I want in my life at the end of this road, whatever the chapter I will start at the end of it may be. I also know that it is nothing I have been able to experience in churches, at least not in services. Perhaps more in the silent prayer and contemplation of an empty church. I come close in my own prayers and devotions and in the chant like music of Taize or Celtic inspired Christianity. In fact, the most spiritual encounter I have had to date was standing in the ancient ruins of Clonmacnoise, a place I must return to one day.

I really have to experience Amma’s Darshan for myself and to find her when she is about to come to London is really quite special. A week on Wednesday (barring THE call of course), I will join her for meditation, Darshan, Puja and Devi Bhava, a celebration an prayer for world peace. I am going with my eyes and my mind open and ready for an exciting spiritual re-awakening and, I think, something amazing and magical deep within my soul.

2.  An Extract from Something Precious Inside

This is a section of the novel that I rustled up between rehearsal and cooking tea, whilst Wills was at his dad's

Oh, how I wished that Sophie and I could have walked out of those doors with Gill and Charlie this afternoon and then hopped straight onto a bus to the biggest firework display in London. Sophie has been determined she is going to see fireworks;

“And so you shall sweetie.” promised Gill.

“I had a feeling you would be excited about bonfire night.”

“Yes!” Sophie replied, jumping on her bed to highlight the point and picking up the bright green painted toilet roll topped with a scarlet cone and tailed with ribbons of red and green crepe paper she had made with Jenny in her school time this morning.

“I’m a rocket! Look at me! Wheeeeeeeee Bang!”

“Watch your line!” I snapped, more at being cooped up in a hospital cubicle on bonfire than any real danger. Sophie’s TPN lines had plenty of give.”

“Why don’t we sit down and have a story.” Gill suggested, lifting Charlie from his play mat on the floor and onto her knee. “I think I have bought the perfect one.”

“Topsy and Tim’s Bonfire Night. I love Topsy and Tim.” Squealed Sophie, adding to the frenzy of excitement I knew was only going to end up in disappointment and tears.

When Gill had finished the story she announced,

“Now, Topsy and Tim is not the only gift I have for you today Sophie.”

“Ah, can I keep it, can I keep it?”

“Of course darling, I bought it for you. And I bought you some more bonfire treats too,” Gill said, delving into her bag. “And some for mummy too. Do you think she deserves them?”

“Yes, she does.” Sophie replied, giggling.

“OK, then. Let’s see what I’ve got.”

Gill pulled out a selection of neon and battery lit bracelets, necklaces and the kind of ‘fake, safe, sparkler replacement toys’ they sell at firework events these days in the name of health and safety.

“WOW!” Sophie exclaimed at her haul, totally overwhelmed and captivated. That’s Gill, she always knows what to do for the best in every situation. Sophie was now sitting calmly cross legged with a  wondrous pile of distraction to make her forget that she was in hospital, and not at a fireworks display this year. Once the lights had dimmed for the evening, she would be having the most magical time anyone behind closed doors could possibly dream of this bonfire night.

“What did you get Mummy?”

“Well, I thought you could share some of those bracelets with her. And… I have got this too.”

Gill handed me a cool bag, although it was warm on my knee.

“What’s inside Mummy?”

“Oh, I don’t know, let’s have a look.”

The aroma was enchanting as I unzipped the bag. The familiar mix of baked potatoes, hot dogs and toffee. It was as if Gill had captured the smell of bonfire night and bottled it for me. Inside the bag was a collection of tupperware pots, foil wraps and a flask. I unboxed and unwrapped sausages, actual oven baked potatoes, cheese, home baked ginger cake, home made cinder toffee, rolls and a flask of tomato soup.

“So now you have everything you need to have the best bonfire night ever right here.”

“But you said I would see fireworks.” Sophie remembered.

“Come on Sophie, look at the lovely things Gill has bought us. Isn’t that kind of her?


“And she’s right Tessa. I did promise. And I never break promises. You know that big window right at the top of the lifts? From that window you can see all the fireworks going off right across this side of London. It is amazing! I watched them last year with Gemma. I’ve already spoken to the nurses and they have said mummy can take you up there as soon as they’ve done your TPN and IVs and that you can stay there until all the fireworks have finished. Mummy can take her special bonfire picnic with her and you can take your sparkly torches and you’ll have the best firework night there is.”

“Thank-you.” I said, gently. Resting my head on Gill’s shoulder. I missed her so much and savoured every second of her visits. I was already looking forward to next time.

3. Getting SASSY

I said yesterday that I had found Amma, or rather, she had found me, through a post on a Facebook page. Last year, I discovered the awesome Lisa and her SASSOLOGY - devoted to living SASSY -  Spiritual, Authentic, Sensual, Sensational, You.

Lisa’s site was one of those that kept popping up through writing links and various randomness until, one day, I noticed she was holding a month of writing, a Sadhana, where a group of women would come together, receive daily inspiration and encouragement from Lisa and hold fellowship and further encouragement with each other in a Facebook group. At the time, my writing needed a kick up the bum so I joined. I did some writing… and I started a theatre group for people with mental health conditions to work alongside other actors…and I didn't do much more focused writing! But, I met and got to know some wonderful women, Lisa among them, who I count as my SASSY Girls of wonder and my friends.

My birthday is at the end of November and at the time Lisa was offering special offer of her book SASSY: The Go-For-It Girl’s Guide to becoming mistress of your ability. I haven't always got on with the preachy or, even worse, overly patronising tone of many self-help, self-discovery books but Lisa talks directly and from the heart in a more conversational style. With the book, she was offering her SASSY SHE Oracle Cards. A deck of cards drawn by hand, each representing a woman with a particular leading quality. The cards can be used in a number of ways, to draw a single, or group, of these qualities and then explore what they mean to you and how you can utilise more of that quality or power in your own life. The cards came in a gorgeous pink organza pouch, the books was personally signed and the whole pack came wrapped in pink tissue paper. I felt my birthday needed a self-gift, all wrapped up with love from Lisa and me.

The book and cards come with me everywhere, to every hospital stay and hospice break. I have found the cards so so useful in unlocking elements of myself, often when they are most needed. I fan the cards out and pick three at times when I feel I need guidance. There are come cards I see a lot of, mostly telling me to trust myself, my instincts, my truth more and to be more self confident. All very true for me. It’s funny because I picked some cards at the time William went onto the transplant list and I started this blog. I wrote a list of the things I wanted or needed for me personally at the start of this journey. Lay it in front of me and picked three cards at random. One of the things on the list was that I wanted a mentor to help me to work out what I should be doing career wise and keep me focused, I wanted to finish my novel, be able to earn enough from my writing for the family to be comfortable and I wanted peace and serenity and to be able to be comfortable in the decision we had made and to be able to stay positive and focused on a good outcome for Wills and the family.

I had never seen the cards I picked out. In face, I had never heard of one of them, Shamana. I picked Omm, Shamana and Compassion.

 I can nearly always interpret my cards in a go get it, rush around doing more more more kind of a way. Those who know me will know that’s how I roll most of the time. These cards are much more spiritual and all about connecting my physical and spiritual sides, taking time to ground myself and to focus on my place in the world and be compassionate to myself, as well as others. There is such a direct tie there with Amma as a guide.

Lisa talks about ‘heart riffing’ - writing wild and raw from the heart about the cards you choose and how they relate to yourself. In fact, Lisa suggests heart riffing about anything and everything that needs your attention. I think this blog is one big heart riff really.

If you are enjoying this blog, please help me to keep going and help crowdfund my Three A Day: Waiting project  and get some lovely postcards and an anthology, limited for only those who support and invest in the project.