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.

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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

Day Fifty-Nine

1. A morning at school...an 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.

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.

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…”

and 

“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.

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

“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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