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
Possibilities
Futures
Destinations
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.

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.

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.

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.

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.

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.


Wordsmith
   
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.

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