Friday, 19 December 2014

Day 70

1. Big News!

It's another Friday, 210 people have now died waiting for a transplant waiting on the list for us. But for us, today is a huge day. Today, my Christmas wish came true and we got that call. An amazing donor family have given Wills the gift of life through their beloved child's organs for Christmas. He is in theatre now. I will write more tomorrow. Please join me in praying for that amazing family and for my awesome little boy.

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

Thursday, 18 December 2014

Day Sixty-Nine

1.  Learning from each other

You may have noticed there was no blog yesterday. We had a tough evening with the inevitable climax of my eldest back from uni with her stress and worry about Wills, the ongoing concern we all have and the fact that all three of us girls seem to sync, creating a monumental clash of hormones! As is so often the case, the explosion cleared the air and allowed us all to get to the point and talk. This included Wills who came and gave me the hugest hugs and told me about how he is feeling really openly for the first time really. I had all this on my mind all evening and, much as I am very open here about my emotions, my children's feelings are theirs and private until they choose to share them. I can say that Wills finally told me how rubbish he is feeling at the moment and was surprised that I already knew. I told him that mummies know these things! It was a difficult evening. It was charged and then emotional, but it was important and, through it, we all know a lot more about how each other are feeling, coping and, at times, struggling. We can now move closer together and support each other more.

Wills carried on in his new spirit of openness today, telling me when he was feeling rough and when things were getting too much for him. I could tell each time but it is really nice for him not to be bottling it all up anymore. Ever since I called our Birmingham team at the start of this year and told them he was unwell, he has worried that being honest with me could lead to another long hospital admission.

Today, we had an appointment at Chelsea and Westminster, fitted in because he has been so under par these last few weeks. This time, we talked about how he was feeling, possible solutions and he was able to say what he wanted. The team suggested increasing his TPN for more energy and because he has been losing weight each month for the last few months. He told them he was happy to go to 22 hours TPN but not 24 and that is what we are trying for the next few weeks. He also asked if he could eat more. He understood the need to rest the bowel if we were hoping it would get better but it isn’t, it is getting worse, it’s failed and he is waiting for a new one. He knows everything he eats passes through unabsorbed but does it really matter if it damages a failed bowel any further? He would rather enjoy food and live with the consequences! He was told food makes his stoma ‘pour out’ but he replied that it does anyway! He then suggested that maybe I don’t want him to be able to eat more than little tasters because I ‘can’t be bothered to get up every five minutes and empty the bag.’ (he did say that with a smile!) In the end, his consultant explained that he is already losing two-three litres of stoma output on his little tasters. If that rose to four litres it would be impossible to cope with fluid replacement at home and he may have to be in hospital for Christmas. I think he got the message!

So, Wills is now on 22 hours TPN every day and will carry his rucksack, containing his four litres of fluid and feed, with him the whole of that time. I hope that gives him some more energy and that he starts looking a bit less peaky. We will increase his nausea medications because feeling sick is draining in itself.

I decided not to take the wheelchair today because we were travelling in peak rush hour. That was a huge mistake! Poor Wills was shattered and very cross with me for that decision by the time we got back to his school for the Christmas parties. A lot of lessons have been learned in these last twenty-four hours and all of them will help us to adapt and cope with the coming weeks and months.

2. Come and work with a child like Wills?

The last two weeks have been exhausting with lots of juggling and very few breaks for me. William has a paediatric nurse with him at school to look after his line and TPN pumps, empty his bag and drains and record his fluid balance and to help him in the classroom. We have two wonderful nurses but they both went home to Africa for Christmas early in the month. We don’t know if they are both returning to William next year. William’s nurses are supplied by Pulse Agency as part of his continuing care package. We have nurses on school days and these nurses can stay in the home if he is too sick for school. We also have two-three days a week in the holidays. This is so essential to us. It is important for Wills not to have his mum at school as I somewhat cramp his cool style. It is important for me not to be in school so I can have a break, do my own work, try and earn money and have a rest, especially as we rarely have a whole night’s sleep.  Much as I have enjoyed spending all my time with Wills and sharing in his school day, it has been hard going to have to juggle all William’s care at home, including many broken nighties with bag leaks and then to go into school all day too.

Paediatric nursing is changing. When William was waiting for his first transplant we spent a lot of time, most of our time in fact, living in hospitals. Now, families can do all sorts of complicated medical treatment in the home, including TPN, IV fluids, IV medications as well as ventilation for children who need that. It’s fantastic. Children should be at home with their families where at all possible and children who have stable but long term and highly complicated medical needs should live as near a normal life as possible. Families need support and help though and children need to go to school while parents work and take a break. Some families have overnight respite care so they can sleep. We used to have that before William’s first transplant as he was in nappies then and needed many changes when he was on his TPN. I have friends whose children need their ventilators monitoring all night and parents need sleep.  It is fantastic to be home with our children bit we need nurses to help us. When William doesn’t have a nurse he can’t go to school unless I go with him and that isn’t always possible and is certainly not desirable.

Children’s nursing is changing and, in many cases, moving from hospital to home. We need nurses at home and in school. It is a fantastic and rewarding role. William’s nurses spend the whole school day with him, helping him learn, make things,  make friends, as well as attending to all his clinical needs. So many nurses feel upset and even leave because they feel frustrated there is not enough time to get to know the children. Well, this type of nursing gives you so much time with a child on a one-to-one basis and, in return, the children will hug you, share their lives with you and make you one of their best friends. William certainly does when his nurse gives him care and attention and helps him fulfil his goals. He really appreciates it.

The sad thing is that there are not enough nurses coming into this side of the job. Many don’t even know about. We need more nurses for William and lots of children like him so they can have the life other children enjoy. If you are interested in knowing more, please have a look at the Pulse website here. Among the vacancies advertised is one to join William’s care package so, you never know, we may see you soon.

3. Are we nearly there yet?

On our travels back from clinic to William’s school Christmas party today we dealt with delays from fire on the line at Victoria, power failure at East Croydon and poor Wills struggling to walk around the stations as I tried to rush him along to get on the trains when they did start running. It reminded me of this poem I wrote a few months ago about our transplant journey.

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

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

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

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

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

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

Tuesday, 16 December 2014

Day Sixty-Seven

1. My Christmas List  (#donationwish)

Towards the end of November, Wills wrote his Christmas wish list for Santa. I wrote mine today and I invite you to do the same.

Most of William’s Christmas wish list is sitting hidden at the side of my wardrobe, waiting to be wrapped up. I say most because he cunningly put in a few items that don’t exist as a test to see if Santa really exists! Santa wasn’t able to make them so we shall see what Wills concludes from that. Santa can’t make my Christmas wish list come true either.

I want Wills to have a new bowel, liver, colon and an extra pancreas for Christmas. I also want people who see my wish list and are not already on the organ donor register to join and tell others that they have joined and what their wishes are. I also want it to snow for Christmas! My mum said that may stop us getting to Birmingham if the other two wishes come true but we can always fly.

My wishes are part of the NHS organ donation Christmas awareness campaign, The Christmas List. The Christmas list we can’t forget, to sign up and save lives. While people across the UK are looking forward to spending Christmas with their loved ones and exchanging gifts, 6 891 people, including Wills, on the transplant list, and their loved ones, will be hoping they get the gift of an organ from a brave and wonderful stranger.

Through the Christmas List campaign, they are highlighting transplant stories and you can get involved. All you have to do is download your own Christmas List, fill it with two wishes supporting organ donation and a third fun one and take a selfie holding your wish list. You can then take to social media with the hashtag #donationwish.

Please do get involved, please tell people about organ donation this Christmas and please do sign that register if you are not already on it.

While I was writing this, my phone rang with that ‘no caller id.’ I wondered, I really did. It wasn’t ‘the’ call - this time but you can help make that call come for people like us if you get involved and share this campaign.

2. A Boxful of Christmas

While we’re on the subject of Christmas wish lists, here is another sleigh reworking on a poem I shared when I was thinking about Christmas gift hampers earlier in the month.

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.

3. The 15 Days of Christmas 

This is the special version of The 12 Days of Christmas I wrote to help the Bright Green Star Man to spread the news about organ donation this Christmas. I know I’ve shared it before but it seems perfect on today’s blog. I promise lots of exciting original writing over the coming days to make up for it. I’ll share the video and last verse with all the gifts for now.

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

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, 15 December 2014

Day Sixty-Six

1. An afternoon in the studio

Wills spent last night and today with his dad so I had a much needed break. I spent most of the day in a friend’s recording studio doing backing vocal harmonies on a really beautiful track. I’m really excited and honoured to be playing a part in it. It’s a huge and wonderful project.

This was the first time I’ve done anything musical since we’ve been on the transplant list and it was really good for me. I do enjoy it and it’s a good break and escape from thinking about the medical things. Today was lots of fun but also hard work and I had to concentrate hard on lots of things; the tunes, pitching, diction, mechanics of making and shaping the sounds…  There was no time to worry about Wills and getting that call, although my phone was silent in my back pocket in case!

I came home re-inspired to sing, play and write some more material. I had an idea some time ago to write some music and spoken word around our journey, incorporating sound scales such as drip pump action and alarms, intensive care bleeps and alarms, voices, oxygen hissing…. there is so much and the transplant journey is an incredible one to look at. I’d like to look at some of the themes and explore them in an abstract way with sound instrumentals and vocals. It’s something I can sketching and recording ideas but it’s not a project that can be fully worked out until we reach our destination. It’s something else to think about and get my creative juices around though and can only be a good thing. Taking this journey with a creative spirit is what keeps me going with positivity.

2. Kaleidoscope 

This is another re-working of an earlier draft shared here. It's getting there this one.

Myriads of frozen fractals
A tremble would jolt
this ordered spectacle
Crimson with green
Indigo with amber
Stunning in perfection

Then the wind blew time
And colours burst
Shards of broken promises
Crashing and spinning
All jostling for position
in the next alignment

3. Christmas begins

In a few hours time, William’s biggest sister, Hope will be home from Birmingham. She’s a student there and it’s been hard for her to be away during the time Wills went back on the transplant list. It’s hard for her hearing how things are and how he is over the phone. She’s in Birmingham so she’ll at least be there when he gets the call but this time is tough for her I know. It would be incredibly ironic if we got the call tonight and ended up leaving Hope behind here.

Until that moment comes, we’re all really looking forward to being together and spending a wonderful Christmastime, full of traditions - some born generations ago and others newer, even born in hospital. We got stared with Christmas right from the start of Advent on December 1st but it really gets going now. Time to open the Baileys.

Sunday, 14 December 2014

Day Sixty-Five

1. 'Darly Dair'

Today I managed to prize Wills off the sofa for a very exciting party at London Zoo. The Zoo is in the middle of Regents Park and about as far away from a tube or bus stop as anywhere in Central London can be and I knew there is no way he would be able to walk that far. He’s been struggling to get around and just a short trip out can wear him out and is impossible for him on a bad day. So, this morning we pulled out ‘Charlie Chair’ or ‘Darly Dare’ as William used to say, down from the attic and brushed off the dust, and an old dried up chip from the days before his first transplant when he used to lick and smell them.

Wills greeted his chair like an old friend with clear relief and excitement at seeing it again. He hasn’t used it for a very long time so I was relived he fits in. He could do with the footplates dropping a bit and it’s not the best chair around these days. It’s very heavy as I found out today. Pushing him in this is certainly going to burn off my Christmas calories. But it will do us for now while we wait for his transplant, although I will get him referred to the wheelchair physio in case our wait is a long one.

I felt sad seeing the chair back in the hallway but just walking up the road to the tram was so much easier than it has been for a while now. We’re having to walk really slowly and keep stopping and so eave extra time to get to places so we’re not having to rush for the tram and train. He’s been complaining his legs are tired and hurt all the time. Having the chair down again will enable us to do more and, as Wills showed me today, he can even fall asleep in it. I’ll still get him to walk on good days and short trips though to keep him moving. He’s got a big operation coming and he needs to be in as best physical shape as possible, although being exhausted is no good either.

For now, Charlie Chair is back in our lives and, with him, comes re-discovering how to travel around London without the tube. Today we crawled from Victoria to Regent Street. It was slow but that really nice because it took us through the lights in Oxford and Regent Street. The New Bond Street ones are amazing. It’s nice to see where we’re going, even though it takes a while longer.

 Like a lot of things in life right now, it’s about making adjustments but there are good things to discover hidden within these tweaks.

2. Embracing my winter mind

One of the big adjustments we’ve had to make over the last few weeks is to spend more time having cosy Christmasy days at home rather than trying to rush about and do loads of Christmas activities out and about. Knowing we had the party to go to today, Wills and I had a movie and sofa day yesterday. In between Star Wars and a very twee Christmas film about Santa and dogs dressed as Santas (during which my friend came round and saved me from having to watch any more)  I had some time to read the latest ‘Psychologies’ magazine yesterday whilst he was playing a game on his iPad. There is a lovely feature in there called ‘Feed Your Winter Mind.’

At this time of year, we are all stuck on the magical side of the season, suspending our disbelief in a winter wonderland of Christmas miracles and festivities. Snowfall during this phase of winter is welcomed as a beautiful carpet and glittery decoration that turns our every day world into a scene from the front of a Christmas card. Come the middle of January and into February that snow takes on a whole new form as we remember that winter is a harsh season, full of struggles and long grey nights. In the age of central heating and electric lighting we can escape the full harshness of winter our ancestors faced and it could be that this has led us to lose an important aspect of the season. The oldest metaphor for winter is the end of life. The feature writer, Rosie Ilfould, challenges us to embrace that ancient winter mind and see the season as an opportunity to look at our lives, accept that some of our old life has gone and recalibrate. After all, this is what nature is doing with much plant life appearing  barren and dead on the surface where there is re-birth and re-growth going on under the surface, ready for the spring.

As I read the feature, I thought of how in tune we are with the seasons in our lives right now. We are enjoying that cosiness and the magic of the Christmas tree and fairy lights dominating our living room. Yet, at the same time, we are having to accept a lot of our life has gone, at least for now. For me, the key things are the freedom to be flexible, to be able to guarantee I will be at a meeting or play rehearsal and to accept there is a more limited supply of energy and concentration left for everything I’m trying to achieve in my work and creativity. I spend a lot of time fighting this and trying to fit everything in somehow regardless, and then getting upset and feeling I’m letting people down when I just can’t be there or do something I promised to do because Wills is home from school, isn’t having a good day or because I’m shattered after a night disturbed by multiple bag and bed changes. A huge part of the journey I am sharing on this blog is about accepting things as they are and learning to roll with it, rather than work around it. I’m recalibrating life and finding a lot more peace and productivity in all areas as a result. It’s a process that is no where near finished yet. Like the roots under the frozen soil, my hidden mind is still working out and brainstorming ideas. It will do me a lot of good to treat this winter as a time of recalibration and be ready for new life and for new ideas to come to fruition in the spring. New life and ideas that work with the life we are living right now, not idea that I’m constant struggling to fit in around it.

The feature suggests activities such as reading poetry and essays, resting by open fires with big chunky novels and journalling as perfect activities for this winter recalibration. Sounds wonderful to me!

3. Believing in magic 

The party we were at today was the Believe in Magic Christmas Party. Believe in Magic are an amazing charity. They do such wonderful things for children like Wills who are poorly and face uncertain futures that they really do make us parents believe in magic. They make magic happen. William’s most treasured iPad was given to him by them when he was adapting to so much time on TPN at the start of the year and we have been lucky enough to go to several wonderful parties. Today was another wonderful day. We had snow fights, saw real rain deer, decorated cakes and biscuits, had champagne (well I did) and got to spend some time with some of the wonderful friends we have made over the years, other families who know just how we feel because they are living similar lives.

It was a truly fantastic day, even the hour we spent walking in the complete wrong direction around the perimeter of Regents Park, me trying to juggle pushing Wills in the wheelchair and carrying a huge box of Star Wars goodies. We ended up having to walk all the way to Great Portland Street to find a bus stop! I need more practise at this tube free travelling clearly.

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, 13 December 2014

Day Sixty-Four

1. No Blog

So I didn't get my three pieces up last night because a lovely friend came round at around five and we talked, drank mulled wine, ate baked camembert and cranberry and put the world to rights until around midnight. I hope there will be many more nights like that over the festive period so I'll be writing hard to get ahead of myself with some pieces that can be shared. It's been a bit hard to do that lately though because life with Wills is so full on at the moment.

Yesterday we changed the stoma bag over six times because of leaks caused by his incessant flow of watery liquid - it was a bad day yesterday. Now I'm concerned because the company who supply them take two weeks to get them to us. They have to get prescriptions from the GP first. But we've used about two weeks work in the last few days and could run out and be unable to get more for Christmas. I'll have to beg, borrow or steal tomorrow.

Last night saw three more bag leaks so it wasn't the best sleep. We're having a lazy morning and I'm fuelling myself up with coffee because we have a very exciting afternoon planned. Watch this space later when I put up today's blog to read more about that and, I'm sure, for some lovely photos.

2. Wishing on a star

After my friend left I spent a short while, a much shorter while than I wanted to because it was soooo cold, watching the sky for meteors. For once, we had a crystal clear sky for a celestial event. I would have loved to have been able to get out of the city lights and somewhere where I could have seen the shower in more detail and glory but, as it was, I saw a few from just outside the house. I wished on my shooting star. Sorry, no prizes for guessing what that wish was?

3.  The greatest gift of all

This is a re-draft of a poem I shared earlier.

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

To you, I give my lungs
They never had a wheeze 
They'll help you to run and jump and sing
And breath at last with ease

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

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

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

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

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

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

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

Friday, 12 December 2014

Day Sixty-Three

1. The end of a hard week

It’s the end of another week and this has been the hardest so far on this journey. Wills has been slowly and gradually deteriorating and this week it has pulled him down to being exhausted and just wanting to be cosy and rest all day. His stoma output is so high that it is almost a full time job to keep emptying and changing bags. We are going to our London, intestinal failure unit at Chelsea and Westminster on Thursday to discuss things and see if there is anything else we can tweak in his TPN (IV feed) to try and boost him a bit or if it will help to have more fluids. It may be that we just have to accept this is how things will be now and we’ll have to adjust again around it. Time will tell. At the moment we are making the most of festive cosiness and enjoying our time with Wills chilling snuggled up on the sofa while we watch Christmas specials and I read and write while he plays with his ipad. I won’t be able to go out much this year but my biggest girl is home from university on Monday and us three girls are looking forward to nights in with the TV and festive drink and nibbles. We’re declaring our house open for (healthy and germ free) visitors for the whole season. When the girls are out, there is really nothing to beat a good book and a big glass of mulled wine by the Christmas tree is there!? So we have adjusted our expectations for this Christmas and have now accepted that and are really looking forward to enjoying our new plans.

I’m sure many of the other 8000 families who have loved ones on the transplant waiting list have had to make similar adjustments this year. And then of course, there are the 189 families who had their loved ones with them when I started this blog but who have sadly lost their lives waiting for their transplant day to come. I think of them a lot as they plan a Christmas without them.

2. 'Listen! We are beginning our story!'

Yesterday, I started reading one of my ‘sit by the Christmas tree with mulled wine’ books for this year, ‘The Old Magic of Christmas: Yuletide Traditions for the Darkest Days of the Year’ by Linda Raedisch. Now when I say I stated, I mean I really have just started it but her opening quote got me thinking;

“ Listen! We are beginning our story! When we arrive at the end of it we shall, it is hoped, know more than we do now.”

This is from one of my most absolute fairy tales, and another story I will add to my Christmas tree pile, Hans Christian Anderson’s ‘The Snow Queen.’ This has one of my favourite stories in itself and has inspired so many of my other favourite books and films of this time of year.

I think this quote says so much about writing our own stories with a really open and honest mind, allowing our mind to take us on a journey of self-discovery as we write. This is something I need to reconnect with in my own life and journalling right now to get myself back on track with the spirit of calm and positivity I want, and need,  to surround myself with right now. I will be writing it out twice, one for the notice board above my desk and one for my rescue box. I’ll also be writing it at the front of my journal. It’s a quote to meditate and brainstorm on.

I love fairy tales. I have loved them ever since I was tiny and had them read to me from books that are now battered and loved and that I look at often even now. I loved them when I was old enough to read longer versions for myself and I fell in love with them even more as an adult,  when I discovered the often dark and mysterious original versions. I love writing based on fairy tales, especially when they are re-told in clever and creative ways. I think I will spend some of these cosy days and nights with Wills re-reading some and coming up with some ideas for my own writing. I came across this wonderful book, ‘Once Upon a Time. A Short History of Fairy Tale,’ by Marina Warner in a review this week and treated myself to it as a companion to my reading and thinking. What perfect reading and writing for Christmas and the darkest months of winter. I’m really looking forward to seeing where my imagination takes me.

3. Make Christmas miracles happen

Christmas is a time for miracles. We have already seen an early Christmas gift of magic for the lovely little Maddiee.  One of our oldest friends in the transplant world started this week desperate for a miracle and it happened today. Other friends of ours are in desperate situations waiting for theirs to happen. We’re in our ninth week of waiting for William’s new gift of life. Last time we waited for twelve weeks so, you never know, that could be a Christmas gift and a Christmas miracle too. When I watch the Marks and Spencer’s “Magic and Sparkle’ advert I just wish I could be one of those fairies, just for one night, and make wishes come true and miracles happen.

 Organ donors do just this for up to nine people so, if you’re not on the register, please do think about joining this Christmas and don’t forget to make organ donation and giving the gift of life part of your Christmas party conversation this year too.

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.