Day Two

1. Get Out Of The Water

When I was seven years old I saw the most beautiful woman whimsically dancing and singing a song that was like nothing I have ever heard before. I was in awe. I wanted to be her and spent many an hour in the living room dancing in my nightie, copying her moves and learning every word of her son. That woman was Kate Bush and the song 'Wuthering Heights.' The first time I saw the video on 'The Multicoloured Swap Shop' is one of those moments I can remember like a film in my mind. It was a transformational moment that inspired so much of who I am now,  even the fact I am here at my desk writing these words. I borrowed my mum's copy of Wuthering Heights and fell in love with words and literature, as well as music. I still hold that my first vision of Kate Bush contributed to my becoming a book worm and writer. I have been writing poems and stories for as long as I can remember and Kate Bush has remained my favourite artist. Her music matured as I did. There seems to be a song among her repertoire for every passage of life, event and emotion. 

In March this year, Wills and I were in our London hospital stabilising the intravenous feed that keeps him alive and getting equipment and training organised to take him home after a long three months in our transplant unit at Birmingham Children's Hospital. At that time, we hoped his bowel would recover but I was nervous and unsettled, wondering what this year was going to bring. It was there I read the announcement that Kate Bush was going to perform. I couldn't believe it! Seeing her live was something I had craved my whole life long. I had to be there! The morning the tickets for 'Before the Dawn' went on sale I sat from long before the sites went live with my laptop, phone and kindle all on different ticket sites refreshing and refreshing... and kept getting tickets in my basket, only to have the sites freeze as I was paying. William thought it hilarious watching mummy get more and more frustrated and then literally in tears when all sites announced the entire run of concerts to be sold out. And then...a message on Facebook to say two wonderful friends had a ticket with my name on it if I hadn't managed to get one. My tears turned to those of pure joy and I couldn't believe it. I couldn't believe it while we waited for August 26th, opening night and our night, to come. At times, I still don't believe it. Did we all dream that incredible evening?

I know not because I have in my possession my precious tour T-shirts, one sent to me as a gift from another wonderful friend, and my KT Fellowship (Kate Bush and her band) rescue kit. This is a metal tin that contained a rescue ring with the words 'Get out of the water,' a little torch that shines the words 'little light shining,' a whistle with 'wake up' engraved on it and some badges and postcards. All of these are lovely reminders of 'The Ninth Wave,' Kate's awesome second half of 'The Hounds of Love' album, that tells the story of a woman lost at sea and trying to stay alive whilst being swallowed up in a dream world. If you have never heard it go and listen now! It is incredible. It was bought to life visually and dramatically on the stage and my tin is a treasured reminder of this but it it so much more too. The concert came the week after we had spent a week in Birmingham for William's re-transplant assessment and came away with the decision that he did need another transplant, although there were still some conversations to have over exactly what organs. 

I find myself listening to The Ninth Wave suite very often at the moment. I can related to it in the situation we are in. There are times I need to 'get out of the water' for a while and so I bought my souvenir with the thought in my mind that I will make it a real rescue tin and fill it with things I can use as my lifeline when I need them. 

My rescue kit contains;

- a posh notebook to write and escape into

- some pens, pencils and nice coloured pens

- writing games for inspiration and to carry me off into my imagination when I need to get out of reality for a while (maybe you'll see some of the results of these as this blog progresses)

- a bar of chocolate - obviously!

- a small bottle of brandy. I wrote about the uses of brandy in rescue yesterday.  and it goes great with the chocolate too.
- hot chocolate  a great lift on it's own but if you add in a tot of the brandy. Hmm nothing like it!
- Teapigs winter spice and chilli chai tea - spicy and warming
- Incense cones because the smell reminds me of chilled out evenings at home or in friends' houses
- lavender oil from the fields Wills and I spent magical mornings in over the summer
- encouraging letters from friends, one with a Before the Dawn pin is already there.
- a book of Celtic wisdom because I am a Celt in my heart. 

What would you put in a rescue kit? What would rescue you when you need to get out of the water of life for a while?

2. A Letter To His Sister 

Nearly everything I write on here is coming live and raw from my keyboard but I will share the occasional piece that I have written before. This is a poem I wrote a few years ago. Although this time on the transplant list is more scary in some ways, it is also a time when I have that wonderful benefit of hindsight. In this poem, I say that I wish someone else had written it and read it to me. This time round, I do have the insight that I wished I had had back in 2008, particularly about balance.

A Letter To His Sister

What if my smile had been there in the playground the Monday afternoon you fell out with your friends.

What if my hands had plastered your knee the Sunday morning you tripped in the back yard while learning to skip backwards.

What if we had finished making ‘Raggy Claire’ before you grew out of playing with dolls.

What if I hadn’t have missed the nativity play when you were seven and an angel.

What if I had been there to wake you on your tenth birthday.

What if I had helped you make cup cakes for your year eight bake sale.

What if my arms had been around you the first time a boy broke your heart. 

What if I had held the bowl and pulled back your hair the night you discovered a full tumbler of whisky is too much.

What if we had seen the Northern Lights, sunbathed on Spanish beaches and spent that Christmas in New York.

What if you had chosen me to share all your secrets.

What if I hadn’t convinced myself you would stay frozen in time while your brother’s life was slipping through my fingers.

What if, through cherishing every moment of your brother’s fragile life I hadn’t missed so many of yours.

What if someone else had written this poem and read it to me the day he was born.

Then, maybe here, on the cusp of womanhood, 

you would not be the child I grieve for now.

3.  Natalie's Nativity

This is a section I wrote for the novel I am writing 'Something Beautiful Inside.' It won't be in the book as it is here because Natalie now has a new name and new mum. Tess is a single mum but the juggling act of being mum to a child in hospital and at home is seen through her eyes as she watches her best friend on the ward struggle with it. I quite like this extract though so it has been on my computer waiting for a good opportunity to weave some of it into the new draft. I think it works well with 'A Letter To His Sister' As everything else in this blog, this is unedited and raw so please excuse any typos or grammatical errors.

I went to Nats’ school to see her nativity play today. I so envied all the other Mums. Big smiles on their faces, able to feel pride without it being engulfed in guilt. I can’t escape that guilt. At the hospital, I feel it because Nats just isn’t getting anything of her Mummy. When I finally give in to Mum’s nagging, and to what I know is right deep down, and be there for Nats for her nativity it is still there. I feel just as guilty leaving Sammy. It is overwhelming. All the other Mums telling me how fantastic I am, what an inspiration, how well I am coping, how they could never imagine being able to cope with what I am going through. Well, do you know what. I don’t feel like I am mother of the year. I feel crap. I feel like I am a shit mother. I can’t be there for Nats, I am neglecting her in all honesty and I can’t do anything for Sammy, not really. Sure I can play with him and comfort him and I know all about his care, more than some of the doctors sometimes, but I am his nurse more than his mother. When I am done with the stoma bag changes, bed changes, washes and watching and silencing monitor alarms. When I am done with all that, I am wasted. I don’t have the energy to really play with him properly. The ward drains my energy. I feel like a shell a lot of the time. There is nothing of me left, nothing of the mother I used to be. So I just can’t relate to all these women who come to me with their pained smiles and pitying eyes to ask me how I am. I don’t know how to react to them. I respond with my own forced smile and tell them I am fine. Well, what else am I going to say? 

‘Well, actually, I am falling to pieces, my whole family is. I spend my hours obsessing over when another mother’s child is going to die and hoping it will happen right now. Yes, that’s the sort of woman I have become, one who wishes another mother’s child dead so that her own can live to be here next year when he will be one of the angels in the nativity with the other reception children. How am I? I am terrified. I feel sick all the time. I can’t eat because a huge knot of panic has take permanent residence in my throat. I can’t sleep because I am haunted by dreams that I will wake and find that I can’t wake up my son. I hate myself because I cannot be there for both my children and being a good mum to one of them necessitates neglecting the other. All in all, I feel shit and just can’t see the day when I am ever going to feel any better. Oh, am I looking forward to Christmas? Of course. I will be spending it, yet again, in hospital in a bay shared with a Chelsea Princess who has fallen over on Christmas Eve and broken her leg. We will be further and further boxed into our side as her adoring family come and shower her in the most ridiculous pile of gifts and lament over the poor darlings misfortune while I try and make the best of a what could be the lat Christmas we have as a family with a bored and fractious seven year old who just wants her Mummy home and is upset because Father Christmas bought the princess a four story Barbie house, garage and stable with three horses and all she got was the caravan; a three year old boy who can hardly stay awake for more than half an hour because his liver can no longer remove the poison from his blood stream and who is in agony because his bowel is so stretched and distended and who will probably end the day fighting for his life with another infection and a Mother who keeps telling me to put your best foot forward and make the best of it all because it’s Christmas Day. Yep, Merry Christmas”

Ok, so I wasn’t in the best of moods when I got there. There is now way that bastard bus driver didn’t see me. I was right in front of me making it perfectly obvious that I was running for his bus. Does he really think I make a habit of wobbling about on a pair of borrowed shoes that don’t fit while waving my arms around. Of course, I had left later than planned. It is so hard to tear myself away from Sammy, especially when the doctors were on their way round. I knew there was nothing new for them to say but I wanted to be there when they came just in case. I should have known they would have forgotten that they had promised to see Sammy first. Stupid Carry wouldn’t remind them either. I hate her looking after Sammy. Such a bloody power crazed bitch. She hates Mums who know more about their child than she does. 

“They know to come to Sammy first”

“I know I asked them Carry but they do often forget these things and I really need to leave at 12 to get to Natalie’s nativity play”

“Mum, they were told on Monday and will do their best. It may be that Sammy is not their top priority”

I have been living on that ward for nine months and the woman still calls me ‘Mum’ Everyone else calls me Tessa, some even Tess. She has to keep that distance to keep me in my place. It is so patronising. Oh, God I am in a bad mood today. 

So, because the silly cow refused to remind them, and because I am so crap at trusting Mum to remember everything they say on ward round. I was running late and would have been OK had that driver just waited a few seconds for me to run that last 10 yards to reach the door. 

I waited for ages and then a 624 came along. I knew there was a bit of a walk across the playing fields from that bus but at least it would get me there so I got on it. I hated the feeling of the bus pulling me further and further away from Sammy. Even though I was getting closer to Nats, I began to feel more and more panicky and lost as I travelled further from Sammy. I hate that hospital but I needed to be there. In our little bay. I felt so exposed out here. I don’t operate in this big wide world any more. I don’t belong here. I had to blink hard to stop the tears coming. I wasn’t about to make a fool of myself crying on a packed bus. 

I had six minutes to get to the concert when I got off the bus. 

 “That should be plenty of time” I found myself declaring out loud. God I am going mad. I don’t think anyone heard me. 

“I will get there Nats!” I said again. I must be so used to talking out loud to Sammy about everything I am doing, giving him that constant commentary because, half the time, there is nothing else to say. Now I am doing it in public. 

I had never approached Natalie’s school from this direction before and hadn’t realised how hilly it was. I pushed as hard as I could to get there quickly. My legs ached and the deep breaths of cold air were burning with my chest. I felt so alone and desperate. I had left Sammy and now I was going to be late. I was letting down both my children at the same time. Those tears were there, sitting in my eyes ready to fall. I willed the school to be running late.

The hall was already full  when I finally got  there and a little boy was reading a stacattoed welcome from a big red card. 

I could see Nats in the huddle of tinsel, white sheets and towels at the back of the audience. She was there in her Mary costume, a costume that I had not made, ready to say her lines that I had not been there to help her learn. Those tears were stinging. As she walked down the aisle, hand in hand with Joseph, the began choir singing ‘Little Donkey’ Well, that was it. Other Mums were crying too, patting away glittering tears sitting on their eyelashes with the tissues they had remembered to bring. At first, I wasn’t even aware of myself. It was only when Mrs Sparks put her hand on my shoulder and handed me a hankie that I realised that my eyes weren’t watering with the other Mums. I was sobbing, really sobbing Tears, sniffs, groans, the lot. I am so careful. I guard my emotions. I can’t cry about Sammy. If I do, what will make me stop? Who will tell me it is alright again? But here was Nats, looking beautiful, taking the main part in the nativity and making me so proud. The barrier had slipped and all my emotion was pouring out in full view of the teacher and other parents and I would have to face them all after the play. I had promised Nats I would stay for the mulled wine and mince pies and then take her back to the hospital with me. Everyone was looking at me. They were trying to be subtle but they were stealing glances whenever they could and now I would have to smile and make polite conversation about the approaching festivities while fending off those they really wanted to ask. 

‘What is happening with Sammy?’

‘What is it like to watch your son dying right in front of you?’

‘What is it like to have our world collapse at your feet?’

‘What does it feel like to be living the nightmare we all dread the most?’