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.

Thursday, 11 December 2014

Day Sixty-Two

This week has been the hardest week so far on the transplant waiting list and I think in it I have somehow lost my way on the journey of self discovery and creativity I embarked on at the start of this blog. So, I have spent some time this evening looking through the poems and other bits I have written and shared here for some inspiration and to help me get my mind back on track. It’s a great exercise. I am feeling a lot more focused and inspired now and have lots of ideas.

I found a kernel of a poem I wrote a few weeks ago with balloons as a metaphor for the absolute explosion of emotions I felt during the day of William’s first transplant. Then I found another draft of a piece I wrote in a poetry workshop a year or so ago that uses balloons and yet another poem I wrote about William’s time in intensive care following his first transplant that opens with the image of his balloon floating above him. Balloons are clearly a bit of a motif for me.

I have had a go at re-writing the first poem a little and thought I’d share the others today so it’s a balloon themed blog today. One of my favourite poets is Sylvia Plath and one of my favourite of her poems is ‘Balloons,’ one of the final poems she wrote. Balloons floating above unconscious children, surrounded by machines, in intensive care is a really strong image in my mind. Since then, we have had a number balloon to mark each of his transplant birthdays. Going back to William and his sisters’ premature births, I always remember feeling sad I never got to see ‘new baby balloons’ beside their cots and my bed in hospital because they spent so much time in the neonatal unit. I think it would be interesting to write a series of poems with the balloon motif. In fact, I have already made a start when I look at all of these poems together. In the coming days and weeks I’ll have a play around them and see what comes…

1. While you are in theatre

You can read the first draft of this poem back here.

Emotions explode as
helium balloons
floating above me
tethered to my mind with gold silk
I can no longer squeeze into physical space
So wander under the big sky
Praying that the universe can contain me
in her arms

2. Intensive care

This is the opening lines of a poem. I like this image but am not happy with the rest of it so I’ll take this and work something else around it in the coming days.

Tiny amidst a forest of technology
my child lies in stillness.
under the shadow of a balloon cloud

3. Visitors 

I think this piece of writing is a bit of a dream about how I imagined and wanted the start of my children's’ life to be.

A large blue dummy-shaped helium balloon and a plump shiny silver one hold hands and dance their way through a crowded hospital ward towards me. Smiling, they bob along to a harmony that only they can hear.
I am propped up on three stiff pillows in an uncomfortable bed, my legs under crisp white sheets that crackle when I move.

My baby wriggles as I cradle him in my arms and reaches out for freedom from his soft woollen blanket. Gently I hold his tiny hand in my giant fingers and rock him gently back in to his peaceful slumber. With my finger –tips I stroke the gap between the top of his nose and the indents what will be his eyebrows.
His red cheeks glow as I run my fingers over them and under his delicate chin.
The balloons hold on to the bottom of the bed one on each side and watch, swaying in the haze of happiness that he has created.

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

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

Wednesday, 10 December 2014

Day Sixty-One

1. Preparing for a cosy Christmas

I woke with lots of plans today. I wanted to take Wills to the Southbank Winter Festival to ride on the little train along the Thames, get lost in the Christmas tree maze and generally have a fun and festive time. Wills seemed excited enough yesterday but when this morning came about he just wanted a ‘onesie day’ on the sofa. I want to cram so much into this Christmas for him but it’s cosy Christmas films and sofa time by the Christmas tree that Wills wants and needs more than anything else. I will get him out a bit but it will have to be paced. I’ll also have to think creatively about things we can do at home to make the most of the season.

If anyone has any ideas please let me know. I asked on Facebook and have some fab suggestions like movie days, clay modelling, board game days, icing biscuits, paper chains… Sounds like lots of fun and it’s cosy with all our lights and the tree around us.

2. Something Precious Inside - Chapter 2

Cosy days at home mean lots of reading and writing for me during the times Wills is playing on his iPad. I shared chapter one of the novel I’m writing a few weeks ago. Here is chapter two. I hope you enjoy it. They are drafts so any feedback is always welcome.

“Mummy look! Do you like my butterfly? Can we hang her up with the orange bird? They can be friends.”
“Oh Sophie, she is beautiful. I do like her glittery wings. I think she needs to dry just a little bit more or the sparkly bits will fall off and I think that will make her feel a little bit sad, don’t you.”
“Yes, I do,” Sophie giggled, clearly quite tickled by the thought of a sad butterfly.  Her nosebleeds had stopped for now and it was wonderful to see her looking so much chirpier than she had earlier in the morning.
“Good morning Sophie.” Dr Hannah announced her presence as she shepherded in her flock of junior doctors, specialist nurses and dieticians. “I see you have inherited your mum’s creative flair. What are you making?”
“Butterflies. I want to hang them up all over the curtain bars so they can fly around me.”
“Sophie, I think..” began Enid, one of the few staff nurses I really don’t warm to at all and today’s nurse in charge of the ward.
“I think that would be lovely,” finished Dr Hannah, throwing me a sly wink.
I have regular arguments with the infection control nurses who come in every couple of weeks, demanding that I take down anything Sophie has made that can’t be laminated and wiped down with alcohol wipes . I understand the importance of keeping things clean in here, really I do.  But I can’t get my head around the idea that a few mobiles, birds and butterflies hanging around the room could cause a hospital super bug! I keep telling them,  it’s one thing if you are in for just a week or so but this is Sophie’s home. It’s her bedroom and will be for as long as it takes for her to get a donor and her transplant, that’s if it ever happens at all. For me, what is most important is that she gets to be an eight year old child as much as possible while we wait and, if that child wants butterflies, fairies or even elephants…flying around her bed, then that is what she can have. I bet Enid was itching to come back and tell me to take it all down while she is in charge but Dr Hannah had put her in her place for today at least.
“Can I introduce you to a new friend Sophie?” Dr Hannah started, “This is Dr Daniel Becker, and he is going to look after you just like Jeremy did. Daniel, can you bring us up to date on what’s been happening with Sophie please?”
“This is Sophie Green. She is eight years old and presented to A and E on July 17th this year with severe vomiting and diarrhoea. Initial blood tests showed her to be severely dehydrated and in renal failure. She was admitted to PICU for dialysis and started on IV fluid hydration and antibiotics. She was admitted to the ward five days later for tests and to re-establish gut feeds. All attempts at re-feeding have failed, scopes and biopsies have shown damage to bowel cell mucosa leading to malabsorption. Sophie was diagnosed with intestinal failure nine weeks ago and started on TPN. Since then, her liver function has deteriorated rapidly and she is now awaiting a liver and bowel transplant. Last night she had several large nose bleeds and, on appearance, looks pale. I would suggest blood tests and an urgent blood transfusion if her HB is below 8, showing her to be anaemic.”
“Well done that man!” I found myself saying out loud, somehow feeling immediately that it should have stayed silent in my head. Daniel looked up from his notes. “Sorry!”
“No need to apologise,” Daniel reassured, “Have you got any questions?”
“No, I think you’ve summed it all up pretty well there and I’m pleased you’re going to do bloods. I was thinking she looks like she needs a transfusion.”
“I agree,” said Daniel, “I’ll come back straight after ward round.
“Perfect!” declared Dr Hannah. We’ll keep everything else as it is for now and Daniel, please keep a very close eye on our Sophie and let me know of any change at all. Let’s keep you relaxed and as well as possible Sophie and hope we get some news from the transplant co-ordinators really soon.”
“Can I go into the playroom now?” Sophie asked. It had been several weeks since she had been allowed out of her room and although the play specialists had been in with all sorts of wonderful things, she was desperate to get out and join in with the other children.”
“I’m sorry pet,” said Dr Hannah, “your blood is still showing me that any tiny infection out there could make you very poorly indeed, even just a sneezy cold. We need to keep you safely away from any bugs on the ward so you stay well enough to have your transplant.”
“I’ll come back really soon and take your blood and I’ll make sure we get the results really fast.” Daniel offered. “I promise you that if there are enough white cells to fight away those nasty germs away you can go and play in the playroom for just a little while.”
Sophie beamed at him, bouncing her shoulders in excitement.
“You’ve got a big fan here already.” I told Daniel. “But Sophie don’t get your hopes up too much OK. We’ve got lots of lovely things to do in here.”
“OK,” concluded Dr Hannah, “Daniel will be back after ward round and we’ll see you soon.”
“Thank you.” I said as the team filed out through the door.
“One more thing,” said Daniel as he left. “Is that the Bats for Lashes new album?”  I had completely forgotten about the music I’d had playing in the background while Sophie and I had been crafting together before the ward round came in.
“It is yes, ‘The Haunted Man’. You know them?”
“One of my favourite bands, well, favourite current bands at least.”
“You have good taste!” I said. He smiled.
 “I’d better catch them up, see you later.”
Daniel had barely closed the door behind him when Gill’s head popped through.
“Well, what did you make of him?”
“He’s alright you know Gill. He was right on it with Sophie’s history and agreed with me that she looks pale and like she needs a transfusion. What do you think?”
“I think you’re blushing, that’s what I think!”
“Shut up!” I said, throwing a pillow at Gill’s head, still peeping though the door.
“Mummy!” Sophie giggled,
“Look at you Sophie,” said Gill, picking up the pillow and throwing it gently at her. “You’re looking a lot grander than you did earlier this morning.”
“Did Dr Hannah say anything else about Charlie going home?” I asked
“Yep! And it could be sooner than we thought. In fact, if he stays this good, we could be going home at the end of next week!”
“Oh Gill, come here.” I said, giving her a huge hug. “That’s fantastic news.” My mouth said the words although my throat felt like it was collapsing in around a huge ball of cotton wall. “That has to be cause for a celebratory Starbucks Run. It’s almost twelve. Let me go and get us a panini and coffee each for lunch. It’s about time it was my shout.”
“That would be lovely. Charlie’s asleep. Shall I sit with Sophie for a while?”
“Yes please, yes please.” Sophie chanted. “I’m making butterflies.”
As I walked out of the room, I paused for a few moments, peering through the window, watching Gill and Sophie cut a butterfly shape from yellow paper and struggling to belief that we had just a week and a half together like this.

3. Wordsmith (where I write about falling in love which is a very rare thing!)

Yesterday, I promised I would share some song lyrics I wrote that were, rarely for me, actually about falling in love rather than breaking up! I haven’t got a decent recording of this to share the melody. I’ll have to work on that so you can hear it.

I’m the girl of  many words
Aways so much to say
Never thinking of consequences      
and power that words convey
But when you hold me close
My veins tingle with each heart beat
And my words become music with you

I am the wordsmith and I haven’t got a rhyme
And I know I have no reason
But the stories that I want to hear now
hide behind your eyes
And I’m silenced for the first time in my life

Those three words always came too easily
Sometimes just thrown away
And they seem now so empty
Too small to hold all that I want to say
‘Cause when you hold me close
My heart beats in time with your heart
And I’m singing in harmony with you

I am the wordsmith and I haven’t got a rhyme
And I know I have no reason
But the stories that I want to hear now
hide behind your eyes
And I’m silenced for the first time in my life
Now you’re the wordsmith

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, 9 December 2014

Day Sixty

1. Positive Spin

I’ll always remember the conversation I had with William’s gastroenterology consultant when he was first diagnosed with intestinal failure back in October 2005, when he was fifteen months old. The first thing I remember is asking if he’d be home for Christmas and having it explained to me in no uncertain terms that he had intestinal failure, organ failure and no we wouldn’t be home for Christmas as there was a lot of tests still do be done and things needed to stabilise but we would start working to get him home on TPN in the new year. The second thing I’ll always remember is the doctor saying that he clearly had not been able to absorb things in his bowel properly since he was born. He had been feeding literally every five minutes as a baby, which was exhausting and very draining on the family, and when we started weaning we dubbed him the baby food factory as it all just seemed to come out the other end. The consultant said this had been missed because his lack of absorption and gut motility problems had caused him severe reflux, the silent type where stomach contents reflux into the lungs, resulting in damage severe enough to make him dependent on oxygen and making everyone think lung disease was his primary diagnosis. He was explaining that this had in fact been due to his bowel and it had been a missed diagnosis. I told him I was pleased about this because, had this been diagnosed from the start, sure it would have meant we could have done the operation to stop the reflux and protect his lungs earlier but he would have been put on TPN as a tiny premature baby. I knew from the other babies on the ward that starting TPN as a tiny little preterm baby would have very quickly resulted in severe liver disease (TPN has improved a lot since then and is much kinder on the liver now). The doctor said to me; “that is one way of putting a positive spin on it!” But I really meant it, I was genuinely pleased this had been missed. Wills may have had to endure several severe lung infections, endless courses of IV antibiotics and oxygen tubes 24/7 but during this time his liver had matured and it could now cope better with TPN.

Again today, Wills has spent the afternoon in a bed made up on the sofa and was asleep by 6pm and has had over two litres of stoma output. This has clearly become his new norm and we will now have to adapt our lives around his need to take things in small chunks with plenty of rest in between. Once again, I’m going to put my positive spin on this situation. Ever since we decided to go for this re-transplant my mind has been wondering; have we made the right decision? Is the timing of this right? Could Wills have carried on as he was on the TPN for a long while and what if things go wrong? Over the last few weeks I have been more and more sure we totally made the right decision. This week, I know it is the only possible decision. The timing is right. If the call came tonight and things didn’t go according to plan, I would be able to rest assured that we did the right thing. Of course,we are positive about the outcomes and, when the call comes, will only focus on being so.

Are we nearly there yet?

This is a poem I wrote and shared a draft version some weeks ago. I've tidied it up a bit. 

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.

3. The beginning of something.

This is something I penned earlier. When it comes to writing about romance I tend to write about break ups rather than the falling in love stage, other than one song which is about falling in love and I'll share with you tomorrow. I'm not sure if this little doodle below is the beginning of a poem or a song.... or if this is it...

Each second takes me a year away from the memories
And time is passing quickly
Each step takes me a mile away from you
And I am running fast

Monday, 8 December 2014

Day Fifty-Nine

1. A morning at afternoon on the sofa

Today is another of those days when it is hard to find the energy and concentration to write on here, let alone three pieces. Let’s see what we can do though..

It has been a tiring day. Because he goes to school on his TPN, Wills has to have a qualified nurse with him. It is really difficult to find paediatric nurses to staff community packages with children like Wills. We are lucky enough to have two fantastic women but they both finished at the end of last week to go home for Christmas in Africa. The agency have been unable to find nurses to staff shifts for the next two weeks so I took William in today. I can’t take him every day so we planned to talk to his teacher and see what days over the coming fortnight will be most important for him in terms of the work and, of course, the all important Christmas parties.

School is, of course, important for Wills but the time he is at school with his nurse also enables me to get on with my own work and have a break while someone else is taking care of William’s needs. This is important for both of us as we need a break from each other from time to time. It’s fun and interesting to take Wills into school from time to time though and today, it proved to be an important eye opener too.

For several weeks now, Wills has been shattered from the minute he gets home from school and falling asleep very soon afterwards. I took it as a few bad days at first but it has become his new norm. Today, I saw just how busy and intense year six is for him. A spelling test, reading group, literacy hour, numeracy hour, all before lunch time and that was enough for him I could see. He was visibly pale and struggling to concentrate at the end of the morning. His teacher told me he has noticed Wills has been struggling more in the last few weeks so we agreed that he needs more half days a week next term than the one he has at the moment. For the next couple of weeks, Wills and I will do a mixture of half days in school, working at home and some Christmasy trips out. I think a lot of time will be spent like this;

Wills cosy on a bed I made up for him on the sofa with his iPad or Christmasy films on TV while I work on my laptop on the chair nearby. It’s festive in a cosy way with all the decorations, lights and Christmas tree around us. We’ll enjoy this time of year as best we can and make plans for the new year when it comes around.

2. Time Bites

I found this among some bits and pieces I wrote last time we were waiting for Williams first transplant. Someone had asked me if I could share with them a photo that sums up waiting for William's transplant.

There are a few images that I think do that but perhaps this one is a good one. Every night, I have the same routine. I have a nice cup of something to help me relax my body and read a book for a while to empty and relax my mind. Making sure my phone is beside me is the last thing I do before I settle to sleep. The book title says it all too.

I love the retro phone there!! I should re-enact that photo for this time round! I think I need to re-adopt that practise of a nice cup of something and reading to empty and relax my ind every night before I go to sleep too! That can start tonight.

3. The lonely poppy

Today, I received my poppy from The Tower of London Installation ‘Blood Swept Lands and Seas or Red.’ It was a birthday present from my parents. I haven’t seen any of the individual poppies yet, or the packaging they come in. It was really very moving to open. The packaging is really well done and seeing that one little poppy that was part of such a huge sea of pottery blooms made think about the individual it represents.

It was hugely poignant seeing all those thousands of poppies as an illustration of the vast number of soldiers lost in WW1 but, somehow, seeing just the one made me think more about the actual person. Each of those poppies represents a life lost, a family in mourning, an empty chair and empty bed. It looks very lonely on its own and that made me think about how lonely it would have been for those men in their trenches. They had comrades but they would have felt small and alone at times too I’m sure, not least at their time of death.

Sunday, 7 December 2014

Day Fifty-Eight

2. Christmas hospital traditions

It has been a fantastic weekend. Yesterday was just wonderful and magical and today has been another fun and festive day. I’m now sitting in the living room, in front of the Christmas tree and surrounded by decorations with Ellie. We’re watching a repeat of the Christmas Gavin and Stacey and talking over Christmases past. I’m sipping on mulled wine too which is heavenly. It’s lovely and cosy but we are both feeling nervous.

For some reason, Christmas seems to be William’s tummy’s favourite time of year to misbehave, and it’s not to do with the food or any of the things that could make the rest of us a bit under the weather. It’s just one of those things. Our big set back that led to William being back on TPN and back on the transplant list happened just after Christmas, in fact, it all started on New Year’s Eve, bringing our festivities to a very abrupt end. A couple of years before that William was feeling unwell on the last day of term, the morning of his Christmas assembly.  He was determined to go in and take part and I watched his stoma bag fill and him look increasingly pale. It was December 20th and we were in hospital by bed time. We worked out a plan to make the most of Christmas day with friends offering to bring Hope and Ellie to us in the hospital early in the morning and William’s dad and girlfriend lined up to take over at the hospital in the afternoon and take the girls and I back home so we could have Christmas dinner in the evening. But during the night of 23rd we were transferred to Birmingham. Before William’s transplant we spent several Christmases in hospital.

Christmas in hospital is always disappointing (although I will make an exception to that this year if we are in hospital following a transplant!). We have always tried to make the most of our Christmases spent in there though and have some happy and amusing memories of canteen Christmas dinner eaten out of polystyrene take away trays with plastic cutlery, hiding Father Christmas presents in hospital rooms and bays waiting for Wills to get to sleep and all the fantastic staff, volunteers and visitors who do so much to make our Christmasy as great and magical as possible.

Having spent so many Christmases in hospital we have picked up some things along the way that have been built into our traditions. Chelsea and Westminster hospital (AKA our ‘Chelsea Pad’ and so much our second home before William’s first transplant that we spent more time there than in our real home) is bang opposite a Carluccio’s. They Christmas range is amazing and we ended up eating and giving lots of their goodies that year. I bought a big panettone and opened it for my Christmas Day breakfast with a big mug of freshly brewed coffee. This has remained my special ‘me time’ moment of Christmas. My coffee and panettone. The Gavin and Stacey Christmas Special is another one. It was first shown in 2008, the Christmas after William’s first transplant. His dad came up in the afternoon and the girls and I went over to the parents accommodation, then in the Thistle Hotel as they were building the Ronald MacDonald House. I had put up a mini tree and bowls of chocolates and crisps ready for us and we spent a wonderful girly evening. They were a bit young for Gavin and Stacey then but were amused at bits of it and at my giggles so we all ended up giggling together, munching on Quality Streets. Gavin and Stacey became firm favourites as the girls got older and got the humour and the Christmas one has always had a very special place in our hearts.

2. Christmas Fair 

After a lovely day of winter wonderland magic yesterday, today was equally magical with William’s school Christmas Fair. His school really go to town with their Christmas Fair and it’s a huge highlight of the year. I’m a bit nervous of big groups of children at the moment after our recent chickenpox contact scare when we learned that just being in contact with the dreaded pox would mean three weeks suspended from the transplant list. Contact for Wills means 15 minutes in the same room as someone with chickenpox, or who goes down with it within the next couple of days. So Wills and I went off to the fair with a plan that we’ll have loads of fun and just keep moving - five minutes in each place and we should be OK. It did mean that he couldn’t join his friends in playing the part of Santa’s elves or waiting in the cafe but at least we got there and we had lots of fun. The grotto was simply magical and I did pretty well in the bottle tom bola and will enjoy sharing my prizes with visitors in the run up to Christmas.

We stayed at the fair for about an hour and half but it was enough to wear Wills out. He was asleep very early again. It's getting bit too consistent for my liking now. Seeing him along side the other children today made it easier for me to see how he is lacking in energy and vibrancy these days. I can't wait to see him firing on all cylinders again. I just hope not too many burn out while we wait for his new wonderful gift.

3. Wisdom from Stan 

A Christmas special ‘Dinner Ladies’ has now replaced Gavin and Stacey on GOLD and, just as I was thinking about what to write next, I heard this;

“Them wires were in a dreadful tangle yesterday but they’re flashing away this morning so there’s a metaphor for you.”

Stan in Dinner Ladies after Bren has told him about a complicated evening.

Saturday, 6 December 2014

Day Fifty-Seven

1. Perfect Strangers

Yesterday, I mentioned a parcel I had received that got me thinking about what hope means to me and remembering Emily Dickinson’s wonderful poem that sums it up so well.

One of my favourite magazines is ‘Oh Comely’ It’s just so fun and quirky. You never know what to expect in it, other than it will be beautiful and something in there will inspire some creative activity or other. A few months ago, I discovered a wonderful project Oh Comely do every now and again called ‘Perfect Strangers.’ The idea is that you register online to commit to send a stranger a box of goodies. Some suggestions are given and it’s all very typical of Oh Comely - a mixture of comforting things like winter drinks, candles, chocolates, sweets, wooly socks etc and more quirky, arty and original things like a photo copy of the contents of your handbag or a disk or memory stick of your favourite songs, photos, quotes and audiobooks etc. I thought it was an awesome idea and just what I could do with to give me a bit of a boost at the moment so I signed up immediately and waited for the day to come when we would be assigned our stranger and given a little bit of information to go on to help us put together a box especially for them. 

I was matched with the beautiful singer and musician, Miriam Watson from Ireland. Miriam is heaps younger than me but I discovered she has loads of things in common with me, such as writing songs and music and some of our favourite bands and artists too. I really enjoyed putting a box together for her and choosing music to go onto a special disk. My box from Miriam arrived yesterday and it was amazing. I really did get a perfect stranger. I was so touched with how personal it was and how much love and thought she had put into matching her gifts and her words to our situation. It was like having another rescue box and some of the things are already in the rescue tin that I turn to to lift me out of the bad days. Among goodies like ginger biscuits - with salted butter too (yum!), sherbet lemons and some amazing sounding tea, Miriam put in a beautiful card which is on the notice board above my desk and will come with me to Birmingham when the time comes, a photo frame with the word ‘HOPE’ on the paper holding the place of the photos, some amazing fairy lights which are up and cheering me no end and a memory stick with some amazing photos, quotes and, best of all, Miriam’s beautiful music. 

I kept meaning to check her out on YouTube was I was putting her box together but never quite got around to it. I was really pleased I didn’t because it meant it was new to me when I heard the tracks on the memory stick. One of these is a beautiful song called ‘Nothing Ventured, Nothing Gained,’ which Miriam said in her letter would help me when I’m having a bad day. It’s a song written for Enable Ireland and released to raise funds so do check it out and buy it. There are some lyrics that really touched me and are perfect for William and I.

“I know you’ll pull through the fight
With all of your courage…”


“You’re al the strength I need”

I’ve said all along that Wills is leading me on this journey. He wanted to go for this transplant right from the start and he has bought us along with him. We look to each other now for strength on the bad days.  The memory stick is also in my rescue box. 

Here is Miriam’s beautiful song and video but please don’t just listen on YouTube. Go and buy it and support her and Enable Ireland.

I think Miriam has a fantastic career ahead and am looking forward to seeing where my ‘perfect stranger’ goes from here.
If you're interested, the next perfect strangers project is in May. I'll be taking part again for sure. 

2. Go through the wardrobe into the woods...

Today, Wills was at the opera with this dad. His dad and his wife are professional opera singers and she was in an opera for children today, apparently about aliens. Wills went along, giving me a Saturday off stoma bags and TPN. I decided to get out with a friend and have a bit of a break. My first thought was to go to Southbank for their Winter Festival but this includes a train along the Thames which Wills will love. We also had a later start than planned because I ended up waking at 11! Unheard of but clearly needed. So we decided to stay a bit more local and have a late brunch and walk in the beautiful Coombe Gardens and Woods and then wander up to the top of Addington Hill.

People think of Croydon as a bit of a concrete monstrosity but we also have several extensive woods and hills. A five minute hop on the tram can take you into a completely different world. Today, I felt like I really was in a new world, almost as if I had walked through my wardrobe into Narnia. Everything was so frosty and beautiful and there weren’t many people around either. It was cold but if you stay in during the winter months you miss so much beauty. It was a perfect afternoon with the frosty woods and gardens and we got the most beautiful display of twinkling ‘fairy lights’ as we watched dusk fall over the whole of London from the view point at the top of the hill. Oh, and our late start served as well too as the lunchtime rush had cleared by the time we had our, er, brunch and we got the prime spot on the sofa in front of the open fire. I think today should become a Christmas tradition, as long as the weather can provide the frost, or even snow for us.

On the memory stick in my ‘perfect stranger’s box was a beautiful picture of sunset over the sea in Miriam’s gorgeous little town. I was thinking of you today Miriam when I took this picture of the sun setting over London. It’s a panorama of the city from the view point. 

3. Dusk brings dawn...

This beautiful quote from Amma came up on my Facebook wall today. It’s perfect for me today and something else that is going into my rescue box.

Friday, 5 December 2014

Day Fifty-Six

1. Another Friday, One of the lucky ones

Another Friday already! Where on earth has this week gone?? Maybe those strange noises so many of us heard on Saturday night were something to do with time stealing!

As always, a Friday marks another week on the transplant list. Another day when look back and think of all those people who haven’t made it to the end of this week waiting for transplant. Another day to be thankful and grateful that we are still here and Wills is still well enough to go to school and enjoy most of the things he loves to do. He may be needing more sleep and rest to compensate these days but remains as determined to live life to the full as ever. In fact, I’m not even allowed to say he has fallen asleep before bed time at 8.30. He won’t admit or acknowledge it. Instead, we have to say he was ‘deep in thought!’ Of course, he says that with his cheeky grin, knowing full well what the term is code for.

So we are full of gratitude today and my thoughts are very much with those 168 people who have died waiting for their transplants while we have been on the list, and the 168 families who are facing a Christmas without them.

2. Sharing tears and 'brokeness'

We’ve been getting ready for Christmas this week. We got our tree on Tuesday and it is already filling our living room with the lovely smell of pine oil. Today, I put up the lights and garland on the fire place. We have had these decorations for years and put them back in the same place every year. Woe betide me if I get the main features of our Christmas wrong, although we do enjoy adding a few things each year and changing some of the bits that complement the centrepieces - the real tree and the mantlepiece garland and lights.

This year I noticed too of the baubles, representing the holly berries on the garland, had broken and their remaining portions had become caught up with each other. They were so entwined that they looked like one bauble and I was confused for a while as to why I couldn’t untangle the garland. These two baubles made me think about how many of my friends who I really love and value as an integral part of my life share the same, or very similar,  ‘broken’ bits as me. Because we ‘get each other’ and understand these cracks and scars we are comfortable together and know the things each other will appreciate from a friend. Shared experiences are so very important and among these people are friends who have been on similar journeys to William and I with their own children and families.

I mentioned a wonderful book ‘Life’s Little Detours’ a few weeks ago. It is a book that I was drawn to during a book shop trip from hospital with Wills because the title seemed to sum up my life so well. The title alone helped me look in a different way at the stops and starts and different pathways I’ve been forced to take so many times when I became mum to a child with chronic health condition. One of the chapters in the book has the title; “Cry with Someone. It’s More Healing than Crying Alone.” I thought of that and re-read it after my little moment with the broken baubles. The author, Regina Brett, was once trying to conceal her tears in a counselling session and was told to stop. That they were beautiful and expressive. Tears are powerful and healing and even more so when they are shared and when we cry together with people who share the same pain. So often in life we hear the phrase ‘don’t cry!’ That phrase is something I’ve never heard said among my fellow broken baubles. When we see each other cry or are tell each other we’ve been crying you’re far more likely to hear us say good, it’s good for you. It’s something we should all do more as humans. Of course we all need comfort but offer the chocolate as comfort after the tears, rather than as a comforter to stop them.

3. Hope

I received a lovely parcel today which I will write more about tomorrow when I have had time to properly look at everything and think about it all. One of the items was photo frame that had the word ‘Hope’ on the paper serving as a spacer before the photo is added. It made me think more about the word and what it means. I was googling an image to go with a piece about hope and re-discovered this beautiful poem by Emily Dickinson.


“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

Emily Dickinson

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