Day Forty-Two

1. 146 lives that could well have been saved!

The end of another week and William has now been waiting six weeks for his liver and bowel re-transplant. This is exactly half the time we spent waiting for his first intestinal transplant. A staggering 146 people have now died waiting for a transplant since we joined them on the list.

The main concept behind this blog is to raise awareness of organ donation and highlight that three people die a day waiting for organ donors in the UK. Several people have been in touch to tell me they have joined the organ donor register as a direct response to reading this blog and following our journey. That makes me so happy because these people could become life savers. If you are not on the organ donor register, please consider signing up today and do let me know if you do.

2. One heck of a stressful day!

I had great plans today and they all centred around having a relaxing and peaceful day and resettling and focusing my mind back on my writing, my spirituality and my positivity as I had been left feeling somewhat rattled and out of sorts from William’s transplant anniversary. What do they say about great plans?? My phone went in the morning to say someone in William’s class may have chickenpox. Chickenpox is a huge deal to transplant patients. It can be very dangerous to people who are immunosuppressed. William has no immunity to it whatsoever and so needs a VZig injection to boost his immunity against it whenever he comes into contact. This is the thing he hates and dreads the most out of absolutely everything he has to go through on this transplant journey. It is a very painful 5ml injection into the muscle on his leg and Wills says it stings so much it is more painful than the transplant itself! My heart sank as I began phoning round to get things arranged. But there was more stress to come!

If this was chickenpox, William would have to be suspended from the transplant list for the full incubation period of 21 days! Three weeks off the transplant list! Three weeks when that rare and precious blood and antibody match could be found. I was told I needed to find out for sure if it was chickenpox but that is not easy when you need to convince parents that they have to take their child home from school and get checked when the benefit is for someone else! I felt awful but it had to be done or Wills could have been suspended for nothing while we waited to see if the child recovered over the weekend. Thankfully, the parents did understand and called their doctor. They also let the school know at the end of the afternoon that the spots had all gone! All was well but it opened my eyes to a situation I had not thought of till now, that Wills could be suspended because of contact to viruses! You can’t just wrap the child in cotton wool at home but it is very tempting.

So much for chilling out and getting myself reconnected and refocused today! I feel more frazzled than ever. I was also planning to write a poem or two to share but no chance with all the endless calls and stress going on. Wills is with his dad for the night so I am off for a drink with a friend. I’m sure this will help ground me again.

3. Watch this space.... 

And so…my final piece of writing will come later tonight so do come back and see what that is. I can’t give you any hints as I have no idea myself!

Day Forty-One

1. Special birthday celebrations

Today was William's 6th transplant birthday. Yesterday was the anniversary of the day his donor passed away and gave him the precious gift of a new bowel and his life. This day is always very reflective for me and I wrote a lot about it yesterday. Today is generally a day for celebration, celebration of life! This year was a bit strange though.

I spent most of the day just willing the phone to ring. I had three 'no caller id' calls and tried to hard to make each of them be 'the call' but, of course, they were PPI and 'our records show you have recently been involved in an accident that was not your fault...' calls. Funnily enough, I didn't get the heart race I usually get when I get a no caller id call. I was just really willing to answer to a transplant co-ordinator each time. Of course, I knew that there is no way it will happen on the same day again (although the day is still very young in terms of transplants as most calls happen in the evening, night and early hours). Having spent time yesterday reflecting on William's current donor and giving thanks, I didn't really feel celebratory today, yet couldn't focus and think about anything else so think just wanted more than ever to get on with the next chapter. I have felt really out of sorts today and Ellie and Wills have too.

William really struggled with today. I haven't really seen him find this all so tough psychologically before. He woke up in a foul mood because of an iPlayer app that he got stuck with and because he had accidentally deleted a video on YouTube, and the one with the most views too! We had a clinic appointment at the Chelsea Pad and he was a complete pain. He said he didn't want to do anything for his transplant birthday today, no gift, no treat. He wanted nothing! Most of that was the mood his day had started in but, while we waiting we talked and he told me that we have always celebrated with a meal out but he didn't want to eat his tiny rations and then sit and watch us enjoy the rest. He said it is "literally torture' for him! He said it was a horrible day and it had been a horrible year and he just wanted to 'moan under his duvet for the day.' I felt so helpless. And then... spotted the electric learning apple thing Wills had been fiddling with. We have a tradition for a food themed gift so I asked him if he would want one of those. As it is a toddler toy that did get a bit of a laugh and we started playing with it together, me teasing him that he would want one and, somehow, the mood lifted. Not enough for him to want to do anything though. Still, at WHSmith at Victoria Station, the last chance for the shopping in London for a gift that I had offered him, he finally said he'd have a look and chose a set of Star Wars Lego books - not food themed but I was just happy he was engaging with it at last as I knew he'd regret not doing so tomorrow. 

We went home and I tidied up a bit and then at the end of the afternoon Wills finally decided that it would be fun to have a bit of a party tea after all and that that meant a balloon would be a good idea too. Every year we have bought a balloon with the number of years on it but Wills didn't even want one of those earlier in the day. So, at 4.30pm, I rushed up the parade of shops at the top of our road and, thankfully, managed to grab a balloon, some party food and a lovely candle holder as a special memorial for the girl who has made his life possible for the last six years and to represent that she will always be with him and part of his life, beyond the time she is with him physically with her bowel. We had a lovely few hours and Wills went to bed having spent some special time celebrating.

The 'donor candle' William lights every year (see next post and video) with the new candle and holder that was lit from it this year. 

2. Introducing William's video diary

One of the things that got William's day started off so badly was that he deleted his most watched video on YouTube. William being William, this meant that he no longer wanted anything to do with YouTube or making videos and had deleted everything to do with that from his iPad. I tried to console him by saying we could make another video that would have as many hits. He loves making films and I have tried before to show him that waiting on the transplant list is a huge opportunity for him to make a video diary of his journey waiting, transplant day and recovery. He was more interested in his Thomas the Tank Engine films and didn't really think anyone would be interested in his transplant journey. He takes things so in his stride it is just normal to him. Today, we talked some more and I suggested that people would be very interested and he could perhaps get more views than the video he had deleted. He was interested but didn't say anything more, until later this afternoon when he had decided to have a party tea after all. As we were preparing it asked me to start his video diary and here is the first instalment. It's on my YouTube channel at the moment so do subscribe if you would like to watch all William's posts throughout the rest of this journey. 

3. No caller id

I shared the first two verses of this poem a few weeks ago, on a day when these calls were giving my heart a fair few challenges. I've added a couple more verses. They need a little work!

The phone flashes up
‘No caller id’
My heart gives a shake
knees buckle and quake
A nurse calls for a chat
about this and that
It wasn’t THE call
this time

A second time, flashing
‘No caller id”
Another nurse, this time ‘continuing care’
needs to come round and share
new care plans and thoughts
and hear our reports
It wasn’t THE call
this time

A third time it flashes
‘No caller id’
Our records show that you
have been in an accident - who knew?
Not me!
It wasn’t THE call
this time

A fourth time, you're kidding!
‘No caller id”
More records, this time telling me why
I could make money from PPI!
It wasn’t THE call
this time

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.

Day Forty

1. 19th November 2008

I will never ever forget the 19th November 2008. I can play it like a movie. It was the most traumatic and wonderful day in my life. In the morning, Wills went down to the operating theatre for endoscopies to try and see if anything at all could be done to stop his bowel constantly leaking life threatening bugs into his blood stream and keep him well enough for transplant. Things were very unstable and it was a big concern that he wouldn’t be well enough should the transplant call come. 

Wills came back from theatre looking terrible but he was so unwell at that time it was kind of to be expected. As the afternoon progressed he was looking grey and his heart rate was over 200 beats/minute. I had seen him very sick many times but I was really scared by the way he seemed. It was a Wednesday that year too and the doctors were all on the weekly grand ward round. There was no one around and I was beginning to panic. Finally, the ward round got to Wills. He was sent for immediate X-rays. When they had been taken we were asked, as usual, to sit outside and wait for them to be checked. The radiographer came out and told us to get back to the ward as quickly as possible. I asked if she’d seen anything and she just said the doctors are waiting for you. We were greeted in the corridor by our consultant at a surgeon who explained that William had a perorated bowel, caused from the scopes earlier on. He needed to go back to theatre as soon as possible for an emergency operation to fix it. Things were being prepared and he would go within the next few hours. I was warned that he was very ill, that this could be a big operation and that it was very likely he would need to be transferred to another hospital for intensive care afterwards. There were no promises that things would be ok and that he would cope with the surgery as he was already so unwell and full of sepsis caused by an infection in his Hickman Line (the line in his chest he had his TPN through, an intravenous feed going straight into his heart and his blood stream.)

Wills went up to theatre and I started to pack for the transfer. 

After just under an hour, one of the nurses came to tell me I was needed in theatre but she couldn’t tell me why. I went up, expecting to be told that there was more damage than was expected and that I needed to sign an additional consent form for more extensive surgery. The operating theatre is on the top floor of the hospital and, as I was coming out of the lift, I was met by the surgical registrar that should be in the theatre. I asked her why she was there and not in theatre and she simply said;

“We’ve stopped.”

“Why?” I asked and was told that she couldn’t tell me. The consultant surgeon who was doing the operation was waiting for me in the anaesthetic room I had left William in and would explain everything. It was only about 100 metres away but I told her that she couldn’t just say that and not tell me anymore and that I needed to know now, I couldn’t even wait to get to the consultant to tell me. It was then that she told me that they had received a call from Birmingham to say a donor had been found and there was a possibility that William would receive his bowel transplant.

The consultant surgeon explained that he was very sick but everyone know how desperate he was for this transplant. There had been a lot of discussion between the transplant team in Birmingham and the team looking after him in London before I had been told and they had decided the best thing would be to stop the surgery as, amazingly, the call had come while they were still prepping him, and send him up to Birmingham where the transplant team could take over and decide what to do. I was warned that it was by no means certain they would go ahead but there was a possibility. Wills was still unconscious and ventilated for the surgery and they were just trying to decide whether to leave him that way and send him by intensive care ambulance so he could go straight into theatre for the transplant or to wake him up and send him. In the end, they decided to wake him but an anaesthetist  would travel with him with a set of sedative drugs and they would put him back to sleep if he became more unwell.

We left London just after midnight got to Birmingham around 3am. After more x-rays and blood tests William’s transplant consultant came to see at around 5am. He told us that, although surgery was very risky for William with the level of infection he had, he still needed his perforation fixing and they may as well take the risk and give him the life saving transplant if they had to take one at all. We just had to wait for confirmation that they bowel was healthy enough. At 6am the transplant co-ordinator came to tell us it was good and we were going ahead with the surgery at 7am. 

We got down to the theatre where the main surgeon was already scrubbing up. His assistant was waiting for us in the anaesthetic room and explained that, if they opened Wills up and found a, “belly full of faeces” they would have to stop and fix the perforation and the transplant could not proceed. But, as the perforation had only just happened, they hoped this would not be the case and that they would be able to give him his transplant. Thankfully they did. His gift was received.

This year’s transplant anniversary is a very reflective one. We give thanks every year to the girl who saved William’s life in the 11th hour when hope seemed such a tiny and flimsy thread indeed, and her family who said yes when asked if they would consider organ donation. This year’s anniversary is especially poignant.

2. Special moments in Buckfast Abbey

Every year, we light a candle to William’s ‘A’ on his transplant anniversary as well as his birthday, Christmas and any other special day that arises. This is to thank her, pay our respect to her and acknowledge that this day would not be if she had not given the gift of life as she passed away from this world. 

This year, we were with my amazing friend, Julie, yesterday on the eve of this special anniversary. We spent the morning at the Paignton Zoo and then decided to drive onto Buckfast Abbey so Julie could light a candle for her son in a place she had many happy memories of him, and Wills could light one for his ‘A.’ 

There were two sets of candles, a blue set on the left of the nave and a red set on the right. William chose the red side and then chose his candle holder and put in a candle. He kept trying to relight the candle whilst still alight to add more fire and make her candle burn with the biggest and brightest flame among all of them. 

We paused and watched it burn for a while, talking about all the things he has done, thanks to her and, naturally, about his feelings about waiting for a second precious gift. 

Tonight, I am reflecting back on that time six years ago and the things that have happened since because of our wonderful donor, and I’m raising a toast to her with the Buckfast Tonic Wine that we bought home with us.

3. Reflecting on a special anniversary

I have always appreciated having the anniversary of William’s gift being given the day before the anniversary of him receiving it. It enables us to spend a quiet and contemplative day reflecting and remembering our donor and her family before a day of celebration of the life she gave him. This year feels very different. It’s very strange. I am SO thankful and that is at the centre of my feelings but it also feels confusing. 

I thought bringing it all back the way anniversaries do would make me feel fearful and anxious about the second transplant but it isn’t at all. Maybe it’s because William had a horrendous night last night with more output of undigested food and water from his stoma than I have ever seen in one night before. Or maybe it’s because, after our wonderful holiday, I feel more ready than ever for this next chapter to begin. Whatever the reason, I find myself wishing and wishing that the phone would ring again on this day and that we could move forward with this second transplant. I think a lot of that is because it feels familiar to go through a transplant at this time of the year. It feels right that the Christmas Market should be there for me to walk through and eat from during breaks from the ward, it feels right that it should be biting cold as I walk from the parent’s accommodation back to the ward (then the Thistle Hotel and now the fantastic Ronald House), it feels right that there should be Christmas lights and music playing. It just feels right that it should be now but that’s just because that is what is familiar. When we go through stressful times we want what is familiar. It’s like a soggy old security blanket.

It’s funny too, I can remember almost every detail of those first hours, days and weeks after William’s transplant. I could always remember it well but I can remember so many more moments right now,  photographic images in my mind. It’s like I need to bottle it all and capture it all. It’s a good job I write because that’s the closest I can do. 

Day Thirty-Nine

1. Feeling ready

Well, today is the last evening in our little holiday. We have had an absolutely amazing time creating some wonderful memories that Wills and I will carry into the next few weeks and months waiting for transplant, and especially through the transplant itself. My little rescue box has some new things in it with postcards and little souvenirs from some of the places we visited,  I have hundreds of photos to print and I’ve finished my Christmas shopping which will make seeing the children open them all the more special as the gifts are steeped in memories. Even practical gifts like refill note pads and tissues are more special when they were bought on such magical days.

More than ever before, I feel ready for the phone to ring. William has been great. The sea air, and lots of it, has done him loads of good. Today though, he was shattered and struggled to walk around the zoo. Granted, the odd extra little nibble he’s had on holiday has contributed, but his tummy is pouring more than ever too. William accepts the way he feels as normal and has adapted amazingly to the fatigue, nausea and discomfort he feels every day. But we do get these reminders most days that he is more poorly than he seems. I would love him to receive his life saving gifts before he has to experience anymore of these things. Although the phone could have rung anytime we have been away, it has been a lot easier to forget about it while we’ve been having so much fun and experiencing so much. It has been a fantastic break and Wills and I feel rested and refreshed but it is experiencing life to the full that is the most important thing to us and the memories that will be treasured forever.

2. Giving a little means a lot

The people who made all this possible for us are the Torbay Holiday Helper’s Network. This was the brainchild of Luke Tillen who owns the absolutely fantastic Hotel Del La Mer in Babbacombe, bear Torquay and where we have been staying. Luke was watching ‘The Secret Millionaire’ one evening and saw ‘Donna’s House,’ a holiday home where families with sick children could go for holidays. Luke was inspired and decided to give a holiday to a family who really needed a holiday away from hospitals and treatments in his own hotel. This was how the Torbay Holiday Helper’s Network was born. From then, Luke inspired and persuaded other hoteliers and owners of self-catering holiday venues across Torbay to give a room or unit for a week for a family to come and experience a break when they needed it the most. To enable the families to have a really amazing experience, he also persuaded most of the local attractions, boat, bus and steam train companies and some of the restaurants and cafes to donate visits, meals and treats to the families. Other local people also donate photography, massages and other pampering treats. This means, that families like ours, can come and have the most incredible time, experiencing everything the area has to offer. It is just amazing and what it so fantastic is that everyone gives what they have and what they can.

People give generously; a day to go and collect a family, a meal in their cafe, an hour on a beach taking photos, a day in their attraction, a ride on their boat, an ice-cream, fish and chips on the sea-front, a specially made handcrafted gift to take home …. All generous gifts in themselves but manageable for those who gave them. When they are all put together they make up something that no one could give alone as it is something that is so much bigger than the sum of all the individual components. It really gets me thinking all the time. We often think that what we have to give is too small and won’t be noticed so we don’t bother. The Torbay Holiday Helper’s Network shows that, if we all give what we can, especially if we can somehow co-ordinate our giving in the same way Luke has inspired and co-ordinated the network then we can really create something that can be life changing for people. We should all be inspired by this.

3. The Star Thrower

This is a story that is very special to Luke and the Torbay Holiday Helper’s Network and is displayed in his hotel.

Once upon a time, there was an old man who used to go to the ocean to paint. Early one morning, he was walking along the shore to find a view to paint that day. There had been a  big storm and he found the vast beach littered with starfish as far as the eye could see, stretching in both directions.

Off in the distance, the old man noticed a small boy approaching.  As the boy walked, he paused every so often and as he grew closer, the man could see that he was occasionally bending down to pick up an object and throw it into the sea.  The boy came closer still and the man called out,

“Good morning!  May I ask what it is that you are doing?”
The young boy paused, looked up, and replied
“Throwing starfish into the ocean. The tide has washed them up onto the beach and they can’t return to the sea by themselves,” the youth replied. “When the sun gets high, they will die, unless I throw them back into the water.”

The old man replied,
“But there must be tens of thousands of starfish on this beach. I’m afraid you won’t really be able to make much of a difference.”

The boy bent down, picked up yet another starfish and threw it as far as he could into the ocean. Then he turned, smiled and said,
“I made a difference to that one!”

adapted from The Star Thrower, by Loren Eiseley

Day Thirty-Eight

I am having some technical problems uploading the blog today. I hope to get it up sometime later or tomorrow morning so please do come back and check. My three pieces are written and waiting to be shared

Day Thirty-Seven

The Fifteen Days of Christmas

At last, I can share with you this very exciting thing that I wrote. You know what Green Stars are by now if you have been following the blog. If not, go back to yesterday when more is explained. This is available to buy tomorrow. I’ll post all the links you need.


On the first day of Christmas
My green star gave to me
The greatest gift there ever could be

On the second day of Christmas
A stranger gave to me
Time with family
and the greatest gift there ever could be

On the third day of Christmas
An angel gave to me
Mummy’s smiling face
Time with family
and the greatest gift there ever could be

On the fourth day of Christmas
My green star gave to me
Energy to play
Mummy’s smiling face
Time with family
and the greatest gift there ever could be

On the fifth day of Christmas
A stranger gave to me
Treasure more than gold
Energy to play
Mummy’s smiling face
Time with family
and the greatest gift there ever could be

On the sixth day of Christmas
An angel gave to me
Rosy cheeks a glowing
Treasure more than gold
Energy to play
Mummy’s smiling face
Time with family
and the greatest gift there ever could be

On the seventh day of Christmas
My green star gave to me
Bright eyes a shining
Rosy cheeks a glowing
Treasure more than gold
Energy to play
Mummy’s smiling face
Time with family
and the greatest gift there ever could be

On the eighth day of Christmas
A stranger gave to me
Hope for the future
Bright eyes a shining
Rosy cheeks a glowing
Treasure more than gold
Energy to play
Mummy’s smiling face
Time with family
and the greatest gift there ever could be

On the ninth day of Christmas
An angel gave to me
Laughter with my best friends
Hope for the future
Bright eyes a shining
Rosy cheeks a glowing
Treasure more than gold
Energy to play
Mummy’s smiling face
Time with family
and the greatest gift there ever could be

On the tenth day of Christmas
My green star gave to me
Precious happy memories
Laughter with my best friends
Hope for the future
Bright eyes a shining
Rosy cheeks a glowing
Treasure more than gold
Energy to play
Mummy’s smiling face
Time with family
and the greatest gift there ever could be

On the eleventh day of Christmas
A stranger gave to me
Daddy’s funny stories
Precious happy memories
Laughter with my best friends
Hope for the future
Bright eyes a shining
Rosy cheeks a glowing
Treasure more than gold
Energy to play
Mummy’s smiling face
Time with family
and the greatest gift there ever could be


On the twelfth day of Christmas
An angel gave to me
A life to share together
Daddy’s funny stories
Precious happy memories
Laughter with my best friends
Hope for the future
Bright eyes a shining
Rosy cheeks a glowing
Treasure more than gold
Energy to play
Mummy’s smiling face
Time with family
and the greatest gift there ever could be

On the thirteenth day of Christmas
My green star gave to me
An end to all my pain
A life to share together
Daddy’s funny stories
Precious happy memories
Laughter with my best friends
Hope for the future
Bright eyes a shining
Rosy cheeks a glowing
Treasure more than gold
Energy to play
Mummy’s smiling face
Time with family
and the greatest gift there ever could be

On the fourteenth day of Christmas
A stranger gave to me
Breath to sing this song
An end to all my pain
A life to share together
Daddy’s funny stories
Precious happy memories
Laughter with my best friends
Hope for the future
Bright eyes a shining
Rosy cheeks a glowing
Treasure more than gold
Energy to play
Mummy’s smiling face
Time with family
and the greatest gift there ever could be

On the fifteenth day of Christmas
My green star gave to me
A world of bright new mornings
Breath to sing this song
An end to all my pain
A life to share together
Daddy’s funny stories
Precious happy memories
Laughter with my best friends
Hope for the future
Bright eyes a shining
Rosy cheeks a glowing
Treasure more than gold
Energy to play
Mummy’s smiling face
Time with family
and the greatest gift there ever could be

An amazing day

Today has been a most amazing day :) Wills and I spent the day with my awesome friend Julie who I have written so much about lately, her husband Chris, taking a day off from being Green Star Man and Lottie, the inspiration behind the 15 days of Christmas. Lottie spent 15 days waiting for a super urgent liver transplant at just days old herself. She was the youngest to survive a liver transplant in the UK so her family know a lot about this situation we are in at the moment, waiting for a transplant no one can give us any survival statistics on because there aren’t any. Julie and I have been waiting to give each other some much needed hugs, mutual support and TLC and we finally got to do so today. Precious precious times. I spent the evening chatting with the awesome Luke, founder of Torbay Holiday Helpers Network at his hotel where Wills and I are staying . An amazing day with amazing people and a day we all so needed to share.

Pictures can paint 1000 words

As it has been such a huge and amazing day, I haven’t really written. I’ve shared my song though so I don’t feel too guilty! I’ll leave you with these precious, precious photos that the amazing Dougie from Peacock Dreams took for us on the beach today.

Day Thirty-Six

Today has been the most incredible day! Truly one of those days I will remember for the rest of my life for so many immensely special things. There is a lot that I will come back to over the coming days and write about a lot more deeply when I have had the time and space to think about things more. Right now, Wills and I are busy making the memories, rather than a  reflecting on them but there is, and will be, very much indeed to reflect on.

1. A  Parade of Bright Green Stars

The reason we are in Devon this weekend is because, today was the day Christmas was officially launched, with bands playing all day, a lantern parade through the town and music with fireworks and lasers over the harbour. All very exciting sure, but why would we travel all this way when our home town, Croydon, switched their lights on this week too and we live near London where all the big A-list get Christmas going. Simple, Torquay did something really amazing this year! Our beautiful friend Julie and her husband Chris have a charity called Bright Green Stars, I’ve mentioned it before so regular readers will already be familiar to the concept. The Bright Green Stars are our amazing organ donors, Green Star Man is a superhero, representing our super hero donors and with a mission to get everyone in Torquay first, the UK next, talking about organ donation and considering joining themselves. This was inspired by their gorgeous little daughter, Lottie, who had a liver transplant as a very young baby and was the youngest surviving recipient at the time.
We actually Julie and Lottie here in Torquay eighteen months ago, even though they are under our transplant team.

This year, Torquay decided to do something different and base their Christmas Parade and switch on around Bright Green Stars and organ donation. What an amazing idea!! William also has a charity, William’s Wishes, and within this William’s Big Wish is that everyone would want to be an organ donor when they don’t need them anymore. So, Wills was very excited to hear what was happening in Torquay. I was asked to contribute something really amazing to the whole Christmas campaign which I am so very near to being able to share with you. I told you on Thursday that Bright Green Star Man had spoken to our other Torquay superhero, Luke Tillen whose charity, Torbay Holiday Helper’s Network made it possible for Wills and I to be here for the parade today.  What we weren’t expecting was that Wills was to lead the parade at the side of Green Star Man!

I was the proudest mum in the world this afternoon when Wills set off through the town, carrying a big bright green star that he said represented his ‘A,’ the donor who saved his life six years ago next week, when he was four years old, as well as Julie’s big brave boy, Daniel, who became a donor a few weeks ago and all the other donors, especially those who saved our many friends in the transplant community. Wills himself represented all those who, like him, really need a bright green star of an organ donor this Christmas. Wills found it really hard going but was determined to keep walking with his star and not to hope into the car ahead of the parade. He wanted to do this for his A and we said that she would be watching and would be really proud of him. At the end of the parade, we went up onto an open top bus where Green Star Man gave a speech to the 20 000 people who had gathered to watch the lantern parade and light show. How amazing that these people got to hear about Lottie - a recipient, Daniel - a donor and William - waiting on the transplant list (although he is also a recipient too) and all the others they represent, instead of hearing a celebrity say a few sentences about their latest book, TV show, album or pantomime. Wouldn’t it be amazing if more towns could do the same and. These events are really all about the Christmas shopping, shopping for gifts and what better opportunity exists to raise awareness of giving the greatest gift of all?!

2. Time to Just Be...Mother and Son

Luke, being the wonderful and caring person that he is, invited Wills and I to come back to Devon right back in January, when Wills was so unwell and spent so much time in hospital. When we knew we were going back on the transplant list I was very much in two minds whether to come as soon as we could arrange things, creating more magical memories…just in case… and to bolster us through what is to come, or whether to leave it as something to look forward to one summer afterwards. In the end, Luke worked his THHN magic and got us here for today and we’ll stay until Wednesday morning. We plan to pack as many fantastic experiences as we can into those precious days and started off very much as we mean to carry on today.

After a yummy breakfast we were straight down the Cliff Railway to Oddicombe Bay Last time we were here there were beach shops and cafes open and the children hired pedal boats. It was an amazing day and one we remember and talk about very often. This morning was very different, Wills and I spent an hour looking for striking and interesting stones to add to our collection, throwing others into the sea and running from the odd wave leading the incoming tide. There were only a handful of others on the beach in all the time we were there, people walking dogs and two very brave people out swimming. It was a really peaceful and intimate time between Wills and I. I could feel all the tension and worry disappear as we played and Wills chatted about wanting to do lots of exciting things in his holiday. I knew that, the Green Star Parade aside, it was really good and important for us to have this time. It would be lovely to have the girls with us but they are older now, Hope is at university and Ellie had things on.

I think it was meant to be really that Wills and I have these few day, just the two of us. When we are usually away from home together it’s for hospital. It does us so so much good to have fun and play, rather than doing treatments and soothing him through painful procedures and surgeries. That’s what THHN is all about!! Three years ago, we had out first ever holiday all together as a family thanks to them and that was incredibly important and special. That was a time when Wills was as good as he has ever been and it was a celebration of having come through so much and looking to the future. This time feels, and is, very different. This time, we are putting memories into the bank to carry us through the very tough times we know we have coming This morning, down on the beach, I realised how much we need this.

3. Tempered by Waves 

Here, I have to apologise for sharing another idea and kernel of a poem rather than even a draft poem. As I said at the start of the blog, I am very much in living mode rather than being reflective. I was watching the sea drag over the stones today and then thinking about how it has tempered those we chose to take home, making them into whatever it was that made them stand out from all the other millions on the beach for us to pick them. I took this photo because I know I want to come back to this idea when I get home and look back on this week.