Sunday, 30 November 2014

Day Fifty-One

1. Overwhelmed

I'm feeling a little overwhelmed today and not just the usual 'heeby jeebies' that come with being on the transplant list. I am feeling overwhelmed because I need to sort all of this

into fourteen of these

and I need to do this  before I go to bed because;

1) I am delivering 5 to Kings Hospital in the morning.
2) because our Christmas Tree is coming tomorrow and I need to put it up exactly where all that mess is.
3) because if we get that cake right now I'd be in a mahoosive fluster!

So, it is in so many best interests I sort this now rather than writing....

These are the 'Christmas in a Box' hampers I wrote about yesterday, together with the poem they inspired.

2. Things that go boom in the night

While I'm on the subject of feeling overwhelmed, did anyone else hear these strange noises last night? I heard something that sounded like the magnetic knocking in an MRI scanning room (which I have been in twice this year with Wills) mixed in with a kind of cross between fireworks and thunder but none of it sounded like anything I have ever heard before. This isn't a surprise as I am hearing lots of things for the first time at the moment as I have hearing aids for the first time. When I hear new things I generally ask about them but, other than Wills,  I was in alone so I asked on Facebook and twitter and found loads of people were as perplexed as me, and not just local people either. 

It is strange there hasn't been more about it in the media. I wonder what it was? There were fireworks in Croydon but it was more than that. To me, what I heard sounded a lot like the start of this video so I think it could have been a meteorite burning up?

If you heard it I'd love to think what you think. Maybe the source of the noise was the reason for my heeby jeebies yesterday?

3. Snowman Soup

This is a poem I wrote today for the boxes. It's my own recipe for 'snowman soup' from one mum to another. In the hampers, it goes with the ingredients in a special mug. It is very yummy, warming  and comforting so I recommend it.

When you’re feeling a little bit blue
Here’s a little something you can do
Make yourself some snowman soup
And take some time out to regroup

Pour the packet in a mug
and add hot water too
Then sprinkle on marshmallows
We put there just for you

Take a moment, take deep breaths
Stir with the peppermint stick
Then drink it nice and slowly
We hope it does the trick

Saturday, 29 November 2014

Day Fifty

1. Heebyjeebies

Gosh, when you blog everyday and especially when the posts are titled with the days gone, it really does mark the passing of time!  Sometimes I look at the numbers and it seems that time is running away with itself and at other times it seems to be going so slowly.

Today has been another of those days when I have the 'heebyjeebies' and just don't feel right. It's a real sense of something coming and it always makes me wonder if the call is coming, or something else. It's real physical nervousness with butterflies and makes it really difficult to concentrate on anything else.

William's stoma output (the measure of how well his bowel is doing) has increased a fair bit this week. It's still steady, nothing dramatic thankfully. It's more that he has a bad day, followed by a bad day...and then you realise that this is the new norm. He doesn't digest but does want to eat very small tasters. In fact, he wants food more than ever now he can't have it but I have to limit it to a mouthful or otherwise it is dramatic! His output is now green or yellow bile with basically vomit floating in it. In fact, at times you can just see what looks exactly like vomit coming from his stoma. It's all very soul destroying but no longer worrying because we know where things are and are putting hope in finding a second wonderful donor and getting him another new tummy. The worst thing in practical terms is that his stoma never really stops seeping and so it is very difficult to change his bags as the area around it just doesn't stay dry enough, even for a few seconds, to stick them. This is resulting in a lot of changes - day and night - and a very tired mum.

2. Pay It Forward

Wills and I have spent many Christmasses in hospital. One year, we went in on 20th and were transferred to Birmingham in the night of the 23rd. We couldn't really take Christmas with us and had to make the best with what was still in the shops. This year, Wills and I, together with our amazing supporters of our charity, William's Wishes, decided to make sure others who will be finding themselves in hospital this year, or who have had a hard year, get Christmas sent to them in a box. Today, I've been sorting the fantastic pile of donations. We can't walk across our living room right now. I am having so much fun sorting out piles of presents, crackers, decorations, chocolates, cake, wine, craft packs... for each family to receive. I can just imagine what it will be like for them to receive them. I have talked before on here about the amazing random acts of kindness people have shown us and how much it lifts you, makes you feel loved and cared about and gives you memories to hold onto. It's great to pay it forward. I love the concept of 'pay it forward' and there is a great movie with that title if you fancy a good, lighthearted feel good movie and be challenged to see what can be achieved when we live that way.

3. Christmas in a box

This is a poem I wrote when I was first putting together the wish list for donations for the Christmas hampers. I thought I'd share it again rather than just putting a link to it. I won't make a habit of re-posting things (unless I have developed them) I promise. It hasn't been a day for writing though. I will do better tomorrow!

Christmas in a Box

I’ll pack you a box full of Christmas;
Mugs with hot chocolate and candy cane spoons
Chocolates and toffees
Jellies fruits and fudge
Christollen, lieberkucken, gingerbread and shortbread
Royal Iced Christmas cake
Nuts, clementines and dates
Bottles of wine, brandy and Baileys
Crackers, paper chains, snow globes,
Real snow
A snow man
A pine scented Christmas tree
Twinkling with fairy lights
and bright decorations
And a pile of wrapped presents
Books brimming with adventures
Handmade Dolls, cars and trains
Candles and perfumes
Board games,
I’ll pack you a box full of Christmas;
Days packed with fun with your loved ones surrounding you
A magic box that makes wishes come true
A pillow to sleep on that stops all your nightmares

An end to the pain and the sickness you’ve struggled with
Face cream for mummy to wipe off worried frowns
Promises that next year will bring good health forever
Energy to run, dance and play like a child should
Days full of happiness
Days full of smiles
I’ll pack you a box full of Christmas
and send it with all of my love.

Friday, 28 November 2014

Day Forty-Nine

1. 147 lives lost

Another week has gone and it's now forty-nine days since we re-joined the transplant waiting list. 147 people have died waiting for their call to come during that time.

2. Happy Birthdays

Today is my birthday. It's often a reflective day for me but this year particularly so. It's hard to think and plan for the year ahead when things are so uncertain and you have no idea what that year is going to bring but I am trying to gather some thoughts and ideas. I have been looking back too, especially to this day six years ago. It was a week after William's transplant and I hadn't seen the girls for ages. Wills and I were living in hospital in the months leading up to his transplant and the girls were living away with my parents in Stoke-on-Trent. Mum bought Hope and Ellie over to see us for my birthday. They got to see Wills for the first time after his transplant and we spent some wonderful time all together. Then we went for lunch and a wonder around the German Christmas Market. I was trying to have a special time with them and focus on them for a while but Wills hadn't been good. His tummy was swollen and his stoma had become huge. There was some concern about him and much as I was trying to enjoy my time with the girls and trust Wills was safe back at the hospital, I felt uncomfortable leaving him. It was a fantastic day though and the best birthday present of all was having all my children with me, even though it ended the way I feared it would - with news that Wills was going to have to go back to the operating theatre for the second time since his transplant to sort out a blockage in his new bowel.

I don't have my eldest, grown up girl, Hope,  with me this year as she is off at university, in Birmingham. She is with us in spirit though and I am just off out for tea now with Ellie and Wills to celebrate being together. So, I make no apologies that this is a quick blog and I'll share more of my reflections with you in the coming days.

3. A guide for reflection...

This is another quote that I've come across recently and seems very appropriate for today and the coming days as I think and plan the year ahead, for my earth year and 2015.

"Ask yourself what is really important, and then have the wisdom and courage to build your life around your answer."

Thursday, 27 November 2014

Day Forty-Eight

1. Happy news at the start of the day

I talk a lot on this blog about the number of people who die waiting for transplant. Well, today, we celebrated the happiness when someone gets that wonderful call to say a donor has been found, someone has said yes to save and transform their life. Today, in the early hours of the morning, our friends Alana and her daughter Madiee got just that call. Madiee had only just a few days ago gone back to the active list after a period of suspension following a virus. I talk about this being a metaphoric journey for us but for Alana and Madiee this is a literal journey too, and a long one. They have travelled from New Zealand to Birmingham for Madiee’s transplant assessment, to wait here for the call, for the transplant and recovery and then for a period of around a year or two afterwards. Intestinal transplant is a tough old road but to travel that away from your family, friends and home is even harder. I was so pleased to hear the news this morning, not just because it means Madiee is on her road to a new and transformed life but because they have just taken one huge leap closer towards being home again. My thoughts have been very much with them, and with their brave donor family today.

It is a little bit tough though when someone close to you gets the call when you are waiting too. I’m not going to lie about that. It’s not that you wish it was you instead at all, well not for me anyway. I am always so so pleased for the family who's turn it is. It’s more that it feels that your call is further away than ever because it has just happened somewhere else and can’t happen so soon again. That’s how it feels to me but I also know that these things can come in clusters. When Wills was so so sick and living in hospital before his last transplant there was also another little girl who spent a lot of time with us there. She was also very sick and was also waiting for a bowel and also liver transplant. When she got her call we were all very excited but a few nurses acknowledged it must be hard for us. I remember writing on my blog at the time that I didn’t think Wills would get the call in time now because someone so close to us had just got a call and it couldn’t happen in the same place again. Wills got his just ten days later! Not only that, there was another little boy who got his call a week or so before her. There were the three of them recovering in adjacent cubicles this time six years ago. So, really, the chances stay the same whatever is happening elsewhere.

I have been thinking about Madiee and Alana all day, thinking about what would be happening and when and re-living our own transplant day. I’ve been thinking about our wonderful team too and the energy and care that would have been happening on the unit today. It’s been a trigger for me to remember how it felt, and how it will feel again. So much mixed emotion. Such happiness mixed with worry and fear and sadness for the donor and their family. I really hope Madiee has a settled night and Alana gets some rest to give them strength to carry them through. I also do hope that this is part of a cluster for our team and we join them there soon. We have spent a fair bit of time together in hospital at the start of the year and Alana and Madiee popped in to see us during our transplant assessment week. They are great people and we’ve had some fun together so I would love us to share more of this journey together.

2. Sad news later on

It’s been an emotional day today for another very sad reason. Today, for the first time ever, I had to take a pet to the vet to be put to sleep. William had a wonderful dog called Ollie. He is a beautiful golden retriever and we love him very very much. Sadly, we had to rehome him because of the risk to William’s line and infection as William has a room at the back of the house and there is no option other than for Ollie to come in through William’s room from the garden - not what you want in a room where you do TPN! Also, we have spent so much time in hospital and have a lot more to come and it was hard to keep looking after him. So, at the start of the year, Ollie went to live in the New Forest and is very happy there with an amazing family, a huge forest to run in and a girlfriend too by the looks of the pictures I’ve been seeing of him snuggled up together. It would be cruel to bring him back, to him and the family who have adopted him and it’s out of the question now.

William was given three rats by a friend who needed to rehome them and we have loved and played with them since the summer. They were already pretty old ladies though and sadly one dropped dead very suddenly on Tuesday. One of them had been looking a bit tottery for a few weeks now and I was surprised it wasn't that one who had died. Today, I was talking to the TPN delivery man who remarked that the rats were quieter than usual. I explained one had died but realised he was right, they were very still. So I picked up their little house and the healthy, oldest one came scampering out but the one I had been worried about didn’t move. I picked her up to absolutely no protest or movement away and thought she was holding her legs a bit oddly. When I put her on the floor she just fell on her side. It was horrible picking up a cold dead rat from the cage on Tuesday so I put this one in a little box with some hay and called the vet.  I ended up carrying her around with me all day, cuddling her, holding her and hand feeding her all her favourite food. I knew what was coming. At the end of the afternoon, Wills and I took her to the vet who confirmed my fears. She had had a stroke or something similar and all her legs were partially paralysed. She was also incontinent and probably feeling very dizzy. We kissed her goodbye and left her to be put to sleep. It was so sad.

This has led, of course, to deep conversations about death and about how strange it is that the oldest rat, who happens to be mum to the other two, although only a few months older, has outlived her daughters. Wills has been asking some searching questions and it has been hard. Small pets teach our children about life and death but Wills knows too much already. He even questioned the poor vet assistant taking our payment today about euthanasia and how it’s strange it is seen as cruel to keep an animal in the state Vitani was in today alive yet it’s murder if you help a human in a similar state to die. It was a deep conversation for a ten year old.

Of course, he is now also questioning again about his dog coming back home now he has lost two of his pet rats in just two days. With the remaining rat on very much borrowed time and now very lonely too, I think we’ll to look into finding some new friends to join the family.

3. A scene from the play 'Nothing to do But Pray.'

It’s Thanksgiving Day in the US and Wills and I have been thinking about everything we are grateful for and how it is all down to his wonderful donor. She has given him every moment we share and every breath he takes. She, and her family, are our heroes.

This is a scene in a play that I wrote a few months ago and am rehearsing for production early next year. In this scene, a mother is wondering whether to donate her daughter’s organs after a sudden brain death following an accident earlier in the day. The play is dedicated to William’s amazing donor.  It is a one act play taking place in the chapel of a busy London hospital during the 24 hours following an accident outside the hospital that will change the lives of many directly, and indirectly involved forever. This is a sneak peak at one of the scenes. If you'd like to read it all then do get in touch.

9.00 pm: Tanya

[Tanya walks in slowly, she is pale and drained in every way. She has some leaflets in her hand. She sits on the first chair she meets]

Tanya: She’s gone! Her body is there, the machines are keeping it working but my baby has gone. They took the machine out of her mouth and she did nothing. I willed her, ‘Come on Molly! You can breathe! I know you can’ I tried to give her all my strength but she did nothing. Two different doctors came and tried all those tests. She’s dead.

[She cries and then tries to speak again, panicking]

I don’t know what to do! What do I do now?

[She breaks down]

Molly.... my baby... I don’t understand what’s been happening today. This can’t be real. Nothing makes any sense.

[She cries quietly then tries to pull herself together and opens the leaflet]

They asked if I would consider donating her organs. I didn’t know what to say. Someone will come and talk to me in an hour. If I say yes, Molly will save lives tonight. I don’t want them to hurt her anymore. She’s my baby. I don’t want them to cut her. I don’t want them to take anything away. [cries again] She’s such a kind girl. [she laughs through her tears] Yesterday she was skipping around in her wings and ballet shoes. You wished you could be a real fairy and grant real wishes. You asked what my three wishes were. I could only think of two. Here you are Molly, here is my third wish. I wish that the clinic had been a little bit longer. I wish I had had one more question to ask. I wish we had stopped for some coffee and ice-cream on the way out. I wish I had done anything to make us later getting to that bus stop.


[Tanya looks towards the light coming from the window]

Yellow and pink, your favourite colours.

[She walks towards the light shadows and stands in it so the colours flash on her skin. She sways and dances, being a fairy, connecting with her daughter.]

You wished to be a real fairy Molly. To make magic happen. That was the last thing you ever asked for. My third wish is to make that come true for you. You and me together Molly,  we’re making Mummy’s third wish come true.
And lots of other Mummies and children are making wishes tonight too and you, my little fairy, are going to fly around making them come true. Tomorrow, there will be people who are alive because of you. There has never been a fairy who worked more magic than that!

[Tanya lights a candle]

For you my beautiful girl. I love you so much. I’ll never stop loving you. I’m so proud of you. Be a brave girl now and I’ll try and be a brave girl too

[lights down]

Wednesday, 26 November 2014

Day Forty-Seven

1. One of many Croydon Champions

I am only just sitting down to write tonight, having been late with William’s TPN and getting him to bed. It was all for an amazing reason though. We spent the evening at the Croydon Champion Awards 2014 where, for the second year running, William was nominated and short-listed for the Child of Courage Award. I think this is an incredibly difficult category to judge. How can you really say who is the most courageous out of three amazing children. I wish they could line them up on the stage, give each a trophy and certificate and say they are this year’s children of courage. All that said, I am so proud to be able to say, in William’s words as I kissed him tonight, I am now the mum to Croydon’s Child of Courage 2014.

William was so very excited and chuffed to win. He beamed and lit up the stage. He was genuinely very surprised to hear his name called out. When we got home he asked why his glass trophy was so dirty with fingermarks and I explained it’s because he cuddled it so much. It is now safely on pride of place on our mantle piece and will be cleaned up tomorrow. William said on the way home that he was dedicating his award to his donor, “she is the bravest child child I have ever known and she has made all this possible.” A big highlight for him was being congratulated by the mayor. He keeps saying he can't believe it. He's been congratulated on Facebook by the MP too so he'll be excited to see that.  I think it has given him a huge boost to win this award today and I hope that will help him loads with the fight he has ahead of him.

The evening was amazing, with some incredible and inspirational people nominated and winning the awards. I found it very emotional. I was particularly moved by the winner of the Sporting Champion Award, Chunilal Butra. Chunilal was a bus driver when, ten years ago, he was brutally attacked with a metal bar and left paralysed. He discovered a love and talent for wheelchair bowls and has become a national and world champion. He was in the table in front of us and stopped Wills to shake his hand when he walked past to collect his award.

Wills was chuffed to bits talking to people afterwards and being congratulated. He will remember this special night forever and I know these memories will be recalled when he needs to be reminded how strong and brave and what an amazing fighter he is when things get tough after transplant. He will know that Croydon are behind him, willing him along and waiting to hear how he gets on.

2. Ordinary people with extraordinary destinies

Chunilal Butra’s story, our own and the stories of so many people I have been lucky enough to meet along our journey show that some wonderful opportunities are there lurking in the darkest shadows in our life. We just have to remember they are there and look for them. Shining a light from our hearts and our souls can be a torch to help find them. I saw this C.S. Lewis quote on Facebook today and it seems perfect for this evening;

“Hardships often prepare ordinary people for an extraordinary destiny…”

C.S. Lewis

3. Be a light

This is another quote that this evening made me remember;

“Some days you will be the light for others, and some days you will need some light from them. As long as there is light, there is hope, and there is a way.” Jennifer Gayle

I think this is so for many of the people we met tonight. It is definitely so for the wonderful parents and families we meet along our journey. There are times when they are struggling and we need to be strong and a light for them, and then we may have a period when things are hard from us and they are our light. I will come back to this. And I will come back to finish the Kate Bush ‘Before the Dawn’ story with ‘After the Dawn.’ But I am shattered and still a bit emotional after tonight so, for today, I’ll leave it there.

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.

Tuesday, 25 November 2014

Day Forty-Six

1. The Rainbow Test

While I am learning ways to settle my waking mind and find peace along this journey through creativity, spirituality and meditation, it seems this has not yet managed to find it’s way into my sleeping mind at night. I find myself having many an unsettling dream. It’s not that they are bad dreams all the time but they are often very realistic, leaving me feeling out of sorts.

One of the main reasons for these vivid and memorable dreams is that I often have to get up in the night to empty full stoma bags or change sheets when they have leaked. This tends to be in the early hours of the morning so I have periods of lighter sleep again close to the time I will be fully up which makes them easy to remember. 

Last night was one such night. Wills drained out a lot from his stoma, my night was broken and my dreams vivid. I dreamt that Wills and I had been called back into Birmingham Children’s Hospital for more tests. I didn’t really understand why as we have exhausted tests and possibilities, other than transplant, which is why we are back on the list. It was our consultant and team but everything was different too so things were pretty alien in my dream. I was told there was a new test where they would inject rainbow die into him and then x-ray him and the rainbow colours would dissipate through his body and show up everything that doesn’t work properly, why and also every complication and set back he will have after the transplant. After the tests, we would be able to fully prepare him for the transplant and begin to treat the complications he was going to face. I woke really confused. It didn’t take me long to realise this wasn’t real but there was something that lingered and made me feel a bit weird all day.

I think that dream came from a conversation I was having on Facebook when another family waiting for the same transplant with our team asked me if I knew anything about an admission for a review and tests. Then there was the TV program about our Chaplaincy team. The rainbow colours dissipating through the body comes from a similar thing in the meditations I’ve been doing. Then throw in my general anxiety about what is to come and my wish that we could have a crystal ball to predict what we’ll face and - voila - that’s my dream!

If only I could do something to keep my sleeping mind calm. And if only the rainbow test really did exist. I know our team would use it all the time if it did.

2. Anticipating the dawn 

At this time of the year we all begin to reflect on the year that was and what next year may bring. I'm sure this will inspire a lot of writing to come on this blog in the coming weeks. I am especially reflective at this time of year as my birthday is late November (in Friday in fact) so I find myself looking back over my earth year as well as the calendar year. In both cases, it has been quite a year!! It has been hard but it has also been incredible! The next two pieces were written this summer at a moment I had been waiting for most of my life!

One of my most vivid childhood memories is the moment I first saw this:

I was seven years old and I was absolutely enthralled and entranced. Kate Bush was to me what Disney Princesses are to little girls today. I wanted to see and hear as much of her as I could in those days before YouTube, DVDs or even videos made it possible to re-watch things over and over again. My parents and then four year old brother must be grateful for that but then, maybe not, because, instead, I would dress in my nightie and sing and imitate Kate Bush...four hours, and 'perform' Wuthering Heights to anyone and everyone who would listen. Like little girls and their Disney Princesses, I wanted to BE Kate Bush.

Looking back, I'm rather glad I had no DVDs or iPads to relive the real Kate Bush because, in between precious glimpses on 'The Multicoloured Swap Shop,' 'Top of the Pops' and various chat shows, I 'just' had my memories and my imagination. Right from that young age, Kate Bush fired up and inspired my imagination. I was fascinated by the story she told in Wuthering Heights and, very soon after, read the book for the first time, helping me on the road to a love of literature and writing.

Kate Bush is one of the main inspirations to the way I write in my stories, poems and especially songs. Throughout my life, as I developed my craft, she has been there showing me how to push boundaries, be eccentric and daring but, above all, sensuous and emotive. To write with your heart on your sleeve and not be afraid to be honest to your vulnerabilities, both in autobiographical writing and when handing it all over to a character. A lot of my style and the themes in writing comes from her inspirations too. Her music is often on as I write and is always the 'go to place' if I get stuck and need some direct inspiration.

I was eight years old when Kate Bush toured 'The Tour of Life.' I didn't go but had it on a video a few years later. Even on film, it was incredible and I longed and longed to see Kate live myself. It was never going to happen though. It was one of those things you resigned to. I've always been glad Kate Bush isn't a 'celebrity' on 'Strictly Come Dancing' and 'Masterchef.' Her mystery and enigma makes her art so much more exciting. You don't hear anything and then. suddenly there is a new album to savour. It's so much more impactful that way rather than hearing her talk about it for months ahead whilst sitting in a Sunday morning mock kitchen talking about the theme of her new piece in between chewing on her 'food heaven.'

Like most fans, I was absolutely astonished when she announced she would be touring. I HAD to see her. It felt like destiny. Alongside inspiring me creatively, Kate's music has inspired me in life. I grew up with her almost like my older sister. Her early music seemed fun and full of stories for the child in me, later she taught me about being a woman in the 'Sensual World' and then, as relationships came and went, 'The Red Shoes' album was there sharing the heartbreak with me. Certain songs have spoken directly to me at times I really needed them to. I'll come back to these in later posts...

The timing of this tour couldn't have been more poignant for me. The tickets went on sale whilst I was in hospital with my son in a life changing situation. The concert itself came in the week before being told he needs to go back on the list for a second transplant and going back to sign consent and re-join the active waiting list. I'm in a major life transition right now and it's not an easy one. This tour has come slap bang in the middle of it and, I know, will be a huge part of it for me.

3. Before The Dawn

I will never forget the morning tickets for Kate Bush's Before the Dawn tickets went on sale. I had my laptop, phone, the iPad William (my son) had borrowed from the hospital and my kindle fire all on different ticket sites. Hospital wifi isn't know for its speed. I was refreshing and refreshing and it kept looking like I had got tickets but then sites froze at critical moments and when they unfroze the tickets in my basket were no longer available! It at least gave Wills some fun laughing at my extreme frustrations. Then it was all over, no more tickets anywhere.  No one could have wanted this more or tried harder to get a ticket. I have to confess I actually cried. Then, as I shared laments with other unlucky fans on Facebook my message box pinged. "I have a ticket with your name on!"I REALLY cried now. Wills was in hysterics too, laughing at me. He still can't grasp the idea of tears of joy! We spent the rest of the day singing 'I've got a golden ticket' from Charlie and the Chocolate Factory. Some amazing people made this possible for me and they are wonderful. I think the whole experience is even more special for me because of this.

That amazing moment was three months ago. It's been a long and hard three months in so many way. I explained a bit about that in the previous post and will come back to it in later ones but yesterday wasn't about that. Yesterday was a break from life. It was a strange and surreal day. I had known for three months that I would be at the opening night of Before The Dawn. I would see Kate Bush walk out on stage for the first time in 35 years! It is so emotional I am welling up writing about it! We think we remember things like how it felt to be a child at Christmas and on the day of your birthday party. Well, take it from me, we only remember a vapour trail of that feeling. Yesterday, I remembered in full how that felt. It was unreal. I was almost nervous I was so excited. I could barely eat, certainly couldn't sleep, I couldn't concentrate on my work. I was literally a cat on a hot tin roof walking around the house listening to music - yep of course Kate, playing a few bars on the piano here and there... I ended up leaving early to meet up with the friends I was going with because I couldn't sit around any longer. How do you feel when the moment comes that you have been waiting for for literally as long as you can remember but never thought would happen?! It's surreal and so incredibly emotional. I was determined to fully enjoy and experience every moment of yesterday. I let myself feel, and cry, when I finally saw and heart Kate Bush right in front of me on the stage.

The gig itself was as incredible, more so than I had expected.  I have never felt so much anticipation looking at a stage before a gig. There were little clues to what was to come. Lots of drums and percussion but that was all to note really.  Then, the band came on and we suddenly heard the mystical,  disembodied grand-maternal voice of 'Lily.' Kate conga'd onto the stage with her choir of vocalists, including her son Bertie who had a big part to play in the show to come. Kate looked amazing in flowing black clothes, bare feet, long hair flowing down her back. She loos mumsy, warm, bohemian, creative, hippy chic, eccentric... once again, I wanted to be her, or like her at least.
The gig started as a pretty standard concert. Awesome lighting, fantastic music. Kate sounded amazing from the off with perhaps a little hint of nerves that were soon discarded and her voice got stronger and stronger through the first segment of the show. She sung songs from Hounds of Love, The Red Shoes and Aerial. At the end of 'King of the Mountain' the stage got stormy with swirls of light and the percussionist stepped out to whirl a wind over his head. Suddenly confetti pieces with segments of Tennyson's 'The Ninth Wave' were blown all over the audience (I didn't catch one so if anyone has more than one and is kind enough to share....) and, I knew things were about to get REALLY exciting.

From the moment Kate announced the tour with the now iconic image of herself floating in water with a life jacket, there was speculation that she was going to play The Ninth Wave section of her Hounds of Love album. This suite is one of my favourite pieces of music so that was exciting for me.

This is where the show became a full piece of multi media musical theatre, complete with film segments, a script that included Kate's husband and son Bertie in a piece of very poignant comedy, an underwater world created with lighting and fabric across the stage, a ship wreck, spooky sea horse skeletons, a life size buoy, flares, a rescue helicopter... It was dramatic, moving, frightening and all the time the music and Kate's voice impeccable. For me, the Ninth Wave section was the absolute highlight of the show. Kate has always seen her music and wanted to portray it as a complete piece of work with visual images. The Ninth Wave came to life, we were living it with her and it was an amazing experience to be part of.

After the interval, Kate bought another suite of music to life. Her Sky Of Honey suite, the second CD in the Aerial set. This was equally stunning but in a more chilled and relaxed way. It opened with a puppet appearing through a massive, Narnia inspired door. This is shown on the front of the programme. Kate's pleas for no photography or film were obeyed by everyone I could see which was important because this was not a night for screens. This was theatre, personal communication and it was wonderful to live the moment and then take it away in memory to inspire thought and imagination.

Bertie played the part of the painter in the suite. With all I'm going through with Wills at the moment, I was particularly touched and moved to see the beautiful bond between mother and son that Kate has written sung about so often being such a central part to the show.

Where Ninth Wave brought drama and excitement, Sky of Honey was beautiful and relaxing. The lighting was just awesome and the set finished with a forest of silver birch trees, one of which went crashing into the grand piano. I'm sure that was meant to happen right?! The piano was certainly ok so I guess so. After a very brief exit, Kate returned alone on the stage to play it during a stripped down and wondrous performance of Among Angels from 50 Words for Snow. The audience were silent. After the drama and spectacle, this was a precious moment for just her and her fans. Then the band came back on for the final song. I was surprised Kate chose to finish with Cloudbusting. I don't know why, I love the song and was very happy to hear it. I guess that one has always been one of those visual one that is a complete film package with the video for me. It worked though and we loved it.

Despite our elongated cheers and shouts for more, Kate didn't return. There was talk and speculation about Wuthering Heights. I never expected her to play it. I would have loved her to but at the same time I didn't rally want her too. That song belongs to the teenage Kate with the big wide eyes. The 56 year old Kate is chilled and mellow. Her voice has dropped in register and her songs are slightly slower and relaxed. Her selection was just what I expected, focusing on the conceptual suites of music that she could really make into a production and theatrical experience with some songs from later albums that have never been performed live before and that are where she is musically and artistically at this stage in life.

This night is not only one of the most amazing times of the year but of my life! The memories of it are still keeping me going and, of course, it was where my rescue tin came from too. Tomorrow, I'll complete this little mini series with 'after the dawn,' how this night has inspired me and a little peek at some ideas that have come out of the experience.

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.

Monday, 24 November 2014

Day Forty-Five

1. Our Second Family 

I have just finished watching our wonderful chaplains at Birmingham Children’s Hospital on the BBC2 Series dedicated to their amazing work. I watch it every week and I don’t think I have managed a single one of the five episodes (all on iPlayer) yet with dry eyes throughout. Our own ward 8 has been featured several times and this week the program followed a young heart patient and her mum as they waited for the decision of her transplant assessment. I knew just how she was feeling, and how she feels now waiting for that phone to ring, simultaneously dreading it and willing it to do so. It was another emotional watch for me and has left me a bit churned up too.

Birmingham Children’s Hospital is a very special place. It really is a village of little families with each ward, and speciality full of such amazing people who become so close knit and those, like the chaplains, who work across them. This makes us so comfortable and secure when we need to be there and makes it feel exactly the right place to be when our little ones are sick. When they are well, we remember it fondly but are happy to be away at home. Being on the transplant list is a funny kind of experience in that we are happy to be home but, at the same time, want to be where Wills can be mended again and get as well as we know he can be. You kind of don’t feel completely settled where you are when you are on the list because you know that at literally any minute, day or night and usually night, you will have to jump up, pack up and go. Your roots can’t go too deep when you will have to up and leave in such a rush. Seeing our hospital world through the little window granted by the TV today left a big part of me wishing so hard for the phone to ring. I’m looking forward to seeing our Birmingham family, including Nick, the chaplain who covers our ward. I’m looking forward to talking with people who fully get how we are feeling. Yet, at the same time, I am loving every second of being home with both children, sleeping in my own snuggly bed with my books and my treasured things around me. I know Wills is feeling the same mix of feelings and desires.

The only thing that is certain when you are living on the transplant list is where you are now, this moment. So it is a fantastic exercise of living in the moment, making the best of it, not dwelling on what has already happened that has got you to this point and not looking ahead to what may happen tomorrow, or even in just a few minutes. I am beginning to find the first bit pretty easy now, in fact it’s becoming a way of life for me to make the best of the moment. The not looking back or forward is a lot more of a challenge! When you are living the moments in hospital you can’t get a birds eye look of yourself in that situation and the people who are there around you. Watching the TV series gives me a really valuable chance to see that and I am really lucky to have it. From that, I am reminded in a very real and visual way how much we will be welcomed back with love and supported every step along those difficult early days and weeks after William’s next transplant. It is incredibly reassuring.

2. Turning Challenges to Opportunities

Before I got all emotional watching Children’s Hospital: The Chaplains, I spent most of the day catching up with journalling on prompts and ideas from the ‘Write Your Freakin’ Heart Out’ prompts. A big section was about reflecting on our own story and seeing it as a journey with endless horizons and possibilities. I wrote the main points of my entire life story on a very wiggly line across the stage. When you have a child like William it seems that life become steadily less stable and it is so easy to look around at everyone else’s life and dwell on the ‘if onlys.’ I wrote about that earlier in the blog here. One thing I am fast realising is how totally futile and pointless  that is. Everyone has their challenges.

Every family has their challenges. I wrote a piece that will get worked into the novel in some way where my heroine takes an evening stroll away from the hospital and looks in on the homes that seem to have everything she is so longing for. I shared that section here if you’d like to read it. A lot of my novel is autobiographical. One way I am using my story is by giving it to my characters and then letting them run with it and see where it leads them. I really did go on a walk along the streets in Chelsea and look into the windows of those beautiful homes and beautiful kitchens and wish so hard to transport my family into those worlds. But, if we had got there, what would we have found? It wouldn’t have been the perfection it seemed I’m sure.

My reflecting and writing on this blog has made me realise that I am tired of trying to battle against the path life has given us. I am tired of trying to put that square peg into a round hole and think that I can live and work in the way that others around with different challenges, but challenges that can be squeezed around a none to five day, or at least a stable flexible hour working can live and work. I have to learn to look at the opportunities the path we are on gives me; the things I learn about myself, the things that can become my strengths and USP and find a way to work and support the family with those tools. I have some ideas, some cunning plans…. so watch this space.

3. A chance to invest in some wonderful goodies

While I am coming up with my new master plan, I am going to shamelessly plug the ‘Three A Day Waiting’ project on ‘Go Fund Me'  again. I am not very good at plugging myself but I need to learn to be better at it if any of my ideas are going to take flight!

I have also been really encouraged to hear from people who can identify with what I’ve written and especially those who have been touched in anyway. That’s why I write and what this is all about and these messages are inspiring me too with ideas for how I could build on this and help others along their own journeys.  Most amazing has been hearing from several people  now that they have joined the organ donor register since reading the blog. This is what I am hoping! I am a writer. I write and I want to use this blog to raise awareness of organ donation and transplants.

It is more than a blog though. When we get the call, I’ll stop the ‘three a day’ but will still continue writing. Along side the new material though, I will be going through all that has been written here, taking the best bits and editing them into an anthology of writing to use to further raise awareness. I want to make a professional job, both writing the pieces each day and in editing and producing the anthology. This will make the biggest impact on my aims but also costs in time and money.

Alongside the anthology, I will design and produce a set of 10 postcards with these depicted on them. These will be available within the first couple of months after William’s transplant - once we have come through the most difficult and critical stages and I can relax and think creatively. During William’s recovery in hospital, I will look deeper into the work on the blogs and take some poems, extracts, ideas and stories and work on them more to turn the unedited, raw material on here into finished works. I will select some of these and put them into an anthology, together with images and photographs from our journey. I will only make 100 of these at the most. The postcards and anthologies will be available only to those who help me crowd fund this project. I have set this up as a  project on Go Fund Me because, there, you the funds are dripped to you as they are pledged, rather than having to wait and see if you get the target and then receiving it all in a lump sum.

 An investment of £5 will get you a postcard, for £10 you will receive 5, for £20 the whole set of 10 and for £50, the set of postcards and the anthology. I’m sure I will add in other goodies as I think of them.

I had to come up with a target for the Go Fund Me page. I would rather have just left that blank as it’s difficult to put a price on writing. If I was to set the target at what creative writing should be worth, or what I get paid to write features in magazines, it would have been much higher and totally unrealistic. Instead, I found out that the average waiting time for an intestinal transplant last year was 188 days. I priced each piece of writing, three a day, at £10 each so £30 each day for an average wait.

If you are enjoying this blog, please think about helping fund this writing project.  I can promise, the postcards and books will be as lovely as I can make them and my thanks will be as heartfelt as can be.  I know I have written about this before but not for a while and having heard that people are signing up to the donor register having read this blog I really do want to double my efforts and need your help for that. Thank-you so much to those who already have invested. I can’t wait to send you your cards and anthologies.

Sunday, 23 November 2014

Day Forty-Four

1. Getting to grips with meditation...mostly at least

Today was the first day trying my new meditation technique alone. Ideally, I’d do this in the morning, first thing to set me up in the right mind set for the day. However, William has been waking at 4am ever since his health deteriorated at the start of the year. Thankfully, he plugs himself into his iPad so I don’t have to get up and entertain him but he is far too present when he is awake to enable me to clear my mind and meditate. My weekday routine is to get up, sort Wills, see him off to school and then take my time before I start my own day. At the weekend, I have to find the moments where I can and sometimes this moment doesn’t come until the children are in bed. Today I found my moment this afternoon, while Wills was at his dad’s.

There are a lot of steps to remember so it was a bit ‘clunky’ today. I was having to open my eyes to check instructions and to look at timings. I was really encouraged though as this method, ‘Integrated Amrita Meditation Technique’ given by Amma for those who have chosen her as their spiritual leader or guru, came far more naturally for me than anything else I have tried. It’s interesting to me. I found it relatively easy to empty my mind and focus on the meditation. I managed to feel energies and vibrations which was really exciting for me as I haven’t been able to experience these manifestations of meditation before. What I struggle with though is visualisation. I think, because I love words and writing and reading are by far my chosen and most comfortable way to communicate, I find that I commentate and tell myself things I should be visualising. I’ll be saying, ‘you are seeing….’ and explain all the detail of the scene to myself…and then this inner commentary interferes with me actually seeing it! I just can’t seem to stop that internal gabble, even now I am beginning to stop thoughts. Maybe once I know the routine better and don’t need to remind myself what I’m doing it will get easier to still my mind even further and see things. Or maybe I need to picture some of the things I am trying to see while not meditating so I have mental images rehearsed? I’ll find ways I hope and it is an interesting time learning something so new. And, it opens up a world of even more books and words too which makes me happy. I love the sound, intonations and vibrations of sanskrit and would love to learn and read some of the ancient words. It’s even more exciting now I can hear it properly too with my hearing aids.

2. There's a world outside your window...

While I was in Devon, I watched this Panorama programme about Ebola on BBC iPlayer.  In fact it was during the night I was awake most of the time as William’s stoma was pouring so much. Although Wills was fast asleep, being in the same room as him I was aware of how he was and couldn’t settle.

The programme follows a doctor from the UK who travels to Sierra Leone to work in an Ebola treatment centre. It showed the real human impact of Ebola, on families and children and through this mans eyes, as he witnessed it. It was absolutely heartbreaking and made me so sad seeing children alone when they were in pain and frightened. We saw a baby whose family had already died lying and dying alone. Other children are made orphans. There are just no resources. There are none of the things we take for granted. No IV fluids, no ventilators or other machines, no IV medicines. The staff try and get very sick people feeling so unwell and vomiting to sip water from syringes and eat bananas. Here, we would be able to hook up IVs and give the sickest people a complete break on life support in intensive care.

We are just so so lucky that we were born into a country where there is such a fantastic health service. We need to fight hard to save our NHS. Without them I wouldn’t have William at all. I fact, I’d have none of my children who were all born very prematurely, or even myself for that matter as I have had many a life threatening asthma attack.

Please do watch this programme. It is interesting and follows the life stories rather than the science. I just wish there was more that I could do than send a donation or buy the new Band Aid 30. I know there is a lot of criticism around that but I love Bob Geldof and really believe he does all he does with the right intentions. Live Aid was one of the memories of my youth and it opened our eyes to things we didn't really know much about or think relevant to us. Sure, those on the record could donate vast sums between them but it is about more than that. Young people love music and the people on the record and so that makes it a great medium to educate them and open their eyes to what else is going on. If there is a debate to come along side projects like this then it can educate them to that too.

3. Something Precious Inside

I haven't shared anything my novel for a while. This is my revamped chapter 1, thanks to the comments I had from sharing an earlier version on here. This is getting closer to the 'final draft' now and so this is all you'll be getting on here... If you like how it sounds you'll have to wait for me to finish and have it published. If you're really impatient or interested in it then do let me know through as I'm looking for some people to read and review it for me along the way.

Chapter 1

“Vanilla latte and a skinny lemon and poppy seed muffin? I think we need to kick this morning off with a Starbucks run if your night has been anything like  the way I hear it’s been.” Gill was standing in the doorway between my daughter, Sophie’s cubicle and Rainbow Ward’s liver and intestinal failure unit’s main bay. As she held the door open, our cosy little world was being invaded by harsh florescent lights and a symphony of bleeping drip pumps, nurse call alarms and at least four TVs blaring the CBEEBIES ‘Wake Up Hour’ theme tune a second or so out of sync with each other.
“Morning Gill,” I slurred, rubbing the burn of sudden light rush from my eyes, “Come in. Sophie’s still asleep so I’m trying to keep it calm in here.”
“Jeez Tess, will you take a look at yourself! I think you need a double espresso chaser too. In fact, make that a triple! Have you forgotten we’ve got a new kid on the block today? The new registrar? We’ll be needing our wits this morning!”  “I know, I’ve been worrying myself crazy about it all night. I mean, Jeremy might have been a prize geek but we know him and he understands the kids. I trust him. I actually feel physically sick at the thought of someone new taking over. But look at you! I can see you’re keen to make the right impression!” Gill’s chestnut hair had a tendency to hang course and frizzy but today, glossy ringlets bounced on her shoulders. She was immaculately made up and was wearing a smart floral blouse that actually looked ironed.
“Too right I am! We have to get off on the right foot with this guy. We need his respect right from the start. Trust me, I’ve seen several doctors come and go over these last eight months and one thing I’ve learned is that, if we want them to treat us as colleagues in our children’s care, we need to encourage it from the get go. Ward round is in two hours, you need to get yourself together Tess!”
Uuuurgh!” I groaned, pulling myself up from the camp bed to get some money from the little locker on the other side of Sophie’s bed.  “OK, I hear you. I’ll have a latte, thanks. Hold the muffin though.  My stomach isn’t going to wake up enough for food until at least lunch time.”
“Was it that rough a night Hun?”
“It wasn't the best. She’s been up half the night with horrendous nosebleeds. Jeremy would have been in by now and done some blood tests. I’m sure she needs a transfusion. I’m shattered! How was your night? How’s Charlie?”
“He’s absolutely fine. Quick, where’s the wood?” Gill stretched out and held onto both sides of the doorframe she was standing in front of.  “Touch wood! All we need is a nice calm and stable week and the big boss, Dr Hannah, has promised she’ll start making plans for us to get home at last.”
“Oh Gill! I’m crossing  all my fingers for you on my left hand. That half of of me wants nothing more than to see you finally take that gorgeous boy of yours home to his daddy and his sisters and see you all back together where you belong. But my selfish right side will miss you so much. What am I going to do in here without you?”
Gill first rescued me the day after Sophie and I arrived on the ward, following a terrifying five days in intensive care. I was taking all my stress out on the washing machine. It had stopped with the door jammed shut on all Sophie’s clothes. Gill walked calmly in, switched it on and off at the plug, tapped it three times on the top, pressed start and the water started swirling again.
“It’s a bit temperamental,” she explained, there’s a knack to it, like everything else round here and you’ll soon pick it all up, I promise.”
Later that evening, while I was warming up yet another insipid cauliflower cheese,  I learned that Gill had become to be quite the expert connoisseur of the full range of microwavable meals in each of the supermarkets within walking distance of the hospital.  I also discovered that she shared my addiction for syrup lattes. Our ‘Starbucks Runs’ have become legendary. Lattes to bolster us before the big ward rounds, surprise lattes, to cheer each other up after bad news, usually with cake thrown in because it would be rude not to really!  I must admit that lately, it’s been Gill treating me pretty much all of the time.
Although seven years older, Sophie is a relative newcomer to the world of intestinal failure in comparison to Charlie, who was born with a massive infection in his bowel eight months ago.  Sophie was fully initiated into the ‘TPN, or total parenteral nutrition, family just nine weeks ago when she went down to the operating theatre to get the Hickman Line, a thin white tube that delivers nutrition, electrolytes and fluids straight into her heart to be pumped around her blood stream. Like Charlie, she now has the badge of the ‘gastro kid’ on her chest where the end of her line hangs from its dressing.

Sophie may be the newest gastro kid on the ward but she sure seems set to make up for lost time. Somehow she has already managed to go through every life threatening complication associated with TPN. She has twice been back into intensive care when infections in her Hickman Line caused her entire body to shut down in shock and, four weeks ago, she went into irreversible liver failure as a direct result of the feed. I still find it impossible to believe that all of this started with a simple virus, virtually just a cold! The medical team here have been amazing. But it’s Gill who time and time again picks me up off the floor,  sometimes literally, and holds me up each day.
It’s strange really. If I had met Gill three months ago we wouldn’t have got much passed social niceties. She’s forty-six for a start,  fourteen years older than me and I tend to hang around with people a fair bit younger as a norm.  I had a Sophie-sized chunk bitten out of my career progression as an artist just when I was getting started, so I’m still at the stage of group exhibiting with recent graduates. My social life revolves around events and gigs where we gossip about the scene, who is going out, or been dumped by who, and talk about exhibitions, bands or films we’ve been to. I wouldn’t have known where to start with a proper adult like Gill. But I have never talked and and giggled this much with any of my art or uni friends and I’ve certainly never shared as much of myself with anyone as I do with her.
“Oh Tess. We won’t be for a while anyway and I promise I’ll come in and see you both loads. Come here…” I shuffled up to give Gill half the chair I was now sitting on and rested my head on her shoulder as she reached out to Sophie, still fast asleep on the bed next to us.
“Ach bless her, she looks exhausted. You both do.” Gill said, hugging me tightly.
“She’s sick Gill. I’m scared!”
“You need that transplant call Hun. This has to be your week. Wouldn’t that put the frighteners on our new registrar!”
“Oh, if only! You know, every morning I wake up wondering if this will be the day we get the call, or the day I lose her. Then every night I go to bed just thankful she has survived to the end of another day.”
“I know petal,  I know. Right! I’m going for those coffees. It’s my treat, and I’m getting you a muffin whether you want it or not.  You need it!  You’re not getting a skinny one either, you’re having a big fat double choc.”
“Fat is what I’ll be sitting around here all day drinking lattes and eating double chocolate muffins.”
“There’s nothing on you, will you look at yourself! You could eat a fair few muffins before you need to worry. Now, get freshened up, put on that red sweatshirt, let your beautiful black hair tumble down over it and slap on some of that gorgeous berry red lippy you used to wear. First impressions count remember!”

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, 22 November 2014

Day Forty-Three

1. The Power of Meditation

A few weeks ago, I wrote and shared a poem here about some of my hapless attempts at mediation. I am not one who finds it easy to clear my mind and be still and silent but when I received Amma’s mantra and she became my guru, I made a commitment to myself to do it properly and meditate with my mantra daily. I have to admit, over the last few hectic and emotional days I have let this slip almost completely and it showed! I have been feeling a lot more stressed and out of sorts and not at all as connected with myself, my relationships, my creativity or the spiritual journey I have been on and the positivity that has been bringing me. So, it turned out to be fantastic timing that today was the day I was booked for a full day long course to learn the deeper ‘Integrated Amrita Meditation Technique’ given by Amma for those who have chosen her as their spiritual leader or guru.

Like everything else from Amma, this is given freely to anyone who wants to learn it. In the spirit I have come to know from anyone associated with Amma, it was given with love and grace and not the teaching but also some of the tastiest samosa I have experienced, posh biscuits and scrummy home made cake. We needed it too as it was a long day. I set off at 7.45 this morning and got home around twelve hours later.

I can’t share too much about the meditation itself as it can only be taught by someone who has been asked and trained to teach at Amma’s ashram. This is to keep the technique pure and prevent it being watered down by being passed from one to the next, further and further away from Amma as the source. So, I will tell you that it is a combination of yoga exercises, mediation, devotion and relaxation. I will also tell you that it is incredibly effective and easy to integrate into the day and I would strongly recommend taking a day out to learn it.

This is all still very new to me and it showed as I threw out my brand new and unused  yoga mat, still curling up at the ends from being rolled in its packet. Around me were rows of mats looking much more used and worn on which sat people looking extremely comfortable in the crossed legged position that makes my thighs scream out in pain after a few minutes. Sitting on a cushion enabled me to cope a lot longer but I did have to fidget a lot more than my fellow course attendees and I had to resort to doing the final run though on a chair. I’m sure I will be able to resemble a cool, chilled out and supple yogi in time.

Just coming back into the presence of Amma through her devotees and through evoking the guru at the start of the session made me feel immediately centred again and back to the frame of mind I have been enjoying these past weeks since my day with her a month ago. This put me good place for the mediation teaching and, by the end of the day, I had finally managed to clear my mind of intrusive, wandering thoughts enough to be able to experience the visualisations and was just beginning to feel the associated vibrations of energy.

I came away feeling re-centred, re-balanced and re-focused on the spiritual and creative aspects of this journey. I also came away knowing how much I need to do these meditations each day at the moment. They are probably the best thing I can do for myself right not.  As a direct result of the calm, peaceful and positive way they make me feel and behave, they are probably the best thing I can do for my family too.

2. Mind Framing 

On that fateful ‘tantrums, tears and brandy night’ that began the creative and spiritual journey at the centre of this blog, I made the decision to surround myself with positivity and avoid any negative entertainment or elements in my life. I have found this to be incredibly effective in keeping my mind positive about William’s re-transplant and the potential outcomes. That buffer of wholesome, positive thinking frames everything we’re going through and thinking favourably becomes a habit, the norm rather than something I have to convince myself about.

Our amazing week away was a fantastic break from even thinking about what we are going through at all. I almost forgot the phone may ring a lot of the time, at least until the last night when William had a really awful night with his stoma output and seemed quite unwell. Since coming home straight into William’s transplant anniversary, followed by the chickenpox scare, I  have allowed my mind to become consumed by anxiety and panic again. Of course, I gave thanks for the six years of life we have had with William at his anniversary. But I also found myself remembering some of the down drops in the post transplant recovery roller coaster and let myself dwell on them too much. I was already in that kind of mind when I was called to say the child in William’s class had spots and a history of repeat chickenpox. I immediately convinced myself it was the pox, despite also hearing the child was susceptible to heat rashes too. I hadn’t seen the rash but KNEW it was chickenpox and KNEW it was going to lead to stress.

Now I am back in my calm and positive mindset after a day of mediation, it is easy for me to see how it is just so true that framing our thinking impacts our interpretation of the world and our feelings and behaviour. If you evoke positivity, seek it out, surround yourself in it you feel it. If you let yourself think the worst will happen, you feel stress and panic. There will be tough days.

We talked a lot today about grace and how to invite and evoke it. The masters or gurus live a life that is pure grace and bliss. I am a long, long way off that so there will be tough days and days when I let the negativity and fears take over. But I don’t enjoy the way I feel and act on these days, and neither does anyone around me, so I need to work harder to learn what gets me back into the positive framing, make sure my rescue kit has all the resources I need in it and make sure I use it when I need it the most. It has been a tough few days but I survived, we all did, and we’re through to the other side now. There will be tougher days to come so it’s important to learn how to make sure these hard times don’t lead me on that slippery slope away from all the good things I have been working towards.

3. If only...

Something else that has really slipped away during this week is my daily journaling with the wonderful Lisa and her ‘Write Your Freakin’ Heart Out’ month. I will be catching up with Lisa and the other ladies this week for sure. I looked at today’s session and one of the journal prompts is writing all our ‘if onlys’ and then tearing them up or burning them. I will be writing about mine in my journal but this concept seemed perfect for another of those list poems I like so much. I thought it would be interesting to take some of the lines I wrote from the ’15 Days of Christmas’ song and reframe them.

If only I could wake up to a world of bright new mornings
If only I had the breath to sing my song
If only I could have reached an end to all my pain
If only I had a life to share with those I love
If only I could hear just one more of Daddy’s funny stories

If only I didn’t have to run out of precious happy memories
If only I could be laughing with my friends on the roller coaster
If only I had the energy to play with my Christmas presents
If only I could see Mummy’s smiling face again.
If only there was more time
If only there was still hope

If only you had said yes when they asked if you
would consider giving me the greatest gift anyone could ever give
If only you had said yes to organ donation

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.