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

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