Tuesday, 11 March 2014

Life on Hold….

Wills is now well and stable but yet we still face many weeks in hospital. William's bowel is currently unable to get all the nutrition he needs and so we are facing a period on TPN, total parenteral nutrition - a feed delivered straight to the heart and into the bloodstream via a catheter in the chest (Hickman or Broviac Line).  This is a relatively complex thing to do at home and the process to set it all up takes time. We are in a hospital away from home and the arrangements can't even start to be made until we are in our local 'intestinal failure/TPN centre' in London. We should have transferred there last week but William came into contact with chickenpox on the ward and so is in isolation in hospital. There were no cubicles available for transfer so we've literally spent the last 10 days in a strange situation of having our lives literally on hold, in a kind of limbo transition between being treated here for an acute situation which is now as resolved as it well be and moving to a new hospital for arrangements to start the funding applications, planning and training for home. When we so arrive in our London our lives will continue to be on hold until we finally get home for good, although we do plan to be at home for as much of the day as possible.

Having a life on hold is a strange feeling but I've been doing a bit of thinking, reading and research and it's not really that unusual in they cycle of our lives to have times when we feel that life, or at least aspects of our life are on hold. I remember travelling back home from university on a coach, watching people out of the windows going about their usual life and feeling I was drowning so much in revision and exam stress that I was never going to live what I considered to be a free and normal life again. Transitional times in our life can be relatively short. I only had a couple of months of extreme 'exam stress' and then I was free to enjoy Glastonbury and the rest of my summer and start a new stage of life doing a PhD.  A transition that has been written about quite a lot is that to widowhood. There are some overlaps here with the situation I am finding myself in right now as many 'widows and widowers in waiting' are carers for long periods of time, having to place their own lives on hold for a while before their spouse passes away and they pick up the pieces of the life they have left. Other transitionary periods include waiting to conceive for couples desperate for a baby and, indeed, pregnancy.

We've been in hospital now for over two months but the earlier stages of this didn't really feel so much like a life on hold for me as William was more unwell and there were constant tests, changes in treatment, a period with a severe chest infection/pneumonia and surgery. It is now, when he is well enough to go home but we are facing a change to the life we live there, that we are in a prolonged transitional stage. I have come across some suggestions of things that we can do to help ourselves to cope with prolonged transitions.


Bernice Neugarten is a psychologist and one of the first to study adult development and ageing. She found that many 'widows in waiting' rehearsed in their minds the life they would live as widows in preparation for the transition.  Mental Rehearsal is something I often find myself doing for things like music performances and it's pretty effective too. As a freelancer, work comes to a bit of an abrupt halt when we're in hospital, especially when it's directly following Christmas when things slow down anyway. I kind of have a blank piece of paper to fill in my working life now and I definitely think it would be a good idea for me to plan and rehearse the kind of ways I'd like to fill it.

Go to Plan B

Some transitions cause you to reshape your dreams and go to plan B. I'm a stubborn woman and don't give up on my dreams easily. Of course, there have been things I have had to abandon. I couldn't hold down a traditional 9-5, or any kind of job really, that involves me being in a specific place at specific times because I can't guarantee I'll be there. I was at the start of a new and exciting theatre project when Wills got sick this time and I've had to shelve that for a while. It certainly won't be abandoned but I do know that plan A for it isn't realistic right now so there will be an element of shift towards at least a revised plan A. Plan A.1 I guess.

Acknowledging that life is on hold

Gail Shelly writes lots of books on passages and transitions in life. I particularly like her theory that we enter a new stage in adulthood at around 45, a stage full of new opportunities. That certainly helps me replace my feelings of 'I haven't achieved enough' with excitement for the things I still have left to do. In one of her books, 'Passages in Caregiving: Turning Chaos into Confidence' Gail says that labelling what it is you are waiting for can be rewarding. It is good for us to acknowledge that our live is on hold and allow ourselves the space and emotions that brings. This is an important point for me as I am constantly trying to do the things I would usually do in life when I'm often too tired, overwhelmed, emotionally drained or all of the above to do them properly. So, I fail, feel frustrated and disappointed in myself and less able to cope in general and the cycle continues down…

Live Life As Fully As Possible

Of course, during a transition when we feel our life is on hold it is only parts of our life that are on hold. We are still alive and breathing every moment of the days we are living in this stage and need to live those as fully as possible. I have some wonderful and precious times with William when we are in hospital. We have all day to talk, make things, play and while I miss his sisters hugely, these things are there to be treasured and it's important they are. Right now, he is with his dad (we're no longer together,  how you manage an ex (and his new wife!)  amongst all of this is worthy of a blog post all of its own), the sun is out in Birmingham and we only have a few more days left here so I'm off to enjoy a little me time. There will be precious little of that when this transition is over and the rest of my life is no longer on hold….

Thursday, 6 March 2014

World Book Day 2014

We've had a tough few weeks, hence the lack of posting lately! I have a list of themes and things to write about but it can be hard sometimes to write about things when you are in the midst of dealing with them and so haven't had the chance to enjoy the time and space to process what you think and what you can take away from your experiences. Events and emotions can just come at you bang, bang, bang when you are living in the hospital and it's a vacuum in here where every little thing adds to the chaos in your mind. That's kind of how the last couple of weeks have been, with lack of sleep due to William waking up uncomfortable after surgery thrown in for good measure. Last night I managed to get away from the ward at last and am refreshed after an evening relaxing at the ever wonderful Ronald MacDonald House and a good nights sleep. What a difference that makes!

I will revisit the things we've been through as I've experienced and the new things I've learned about life and myself over the coming days and weeks but today is World Book Day and, as a writer and one who devours books, I can't ignore that on here. Wills woke disappointed not to be at school enjoying the fancy dress parades and activities but I've left him now writing his 'Top 5 Best Thomas the Tank Engine Character Guide' with the school teacher so he's feeling a little better. Wills is Thomas obsessed but has also been enjoying reading books from the Horrid Henry and Mr Majeika series. It can be hard work getting him to putt down YouTube and read a book in here but the minute he has a book in his hand, after being told he has to read one chapter, he rarely puts it down again until it's finished. He has also been writing some new Thomas stories too as well as an adventure story about him and his best friends.

I am currently writing a novel that is set in the hospital and, although my brain hasn't been up to writing the kind of prose I'd be happy sending to an agent or publisher over the last few weeks, I have scribbled down endless lists of themes to address, situations to include and characters notes. It was the biggest silver lining to the cloud we've been living under when I decided to look at it as a golden opportunity for 'research.' I know once I get back into the writing it will flow gloriously with all the wonderful groundwork I've been able to do. The book was half written but another thing I've been doing a lot of over the last couple of weeks is reading and some of the books I've read have influenced me, and the way I think I should write the book, hugely. So much that a I'm going to completely restart it.

I was kept going through first 48 hours after an operation William had last Wednesday by reading the absolutely amazing "The Shock of the Fall" by Nathan Filer. I heard about this book at the start of the year when it was nominated for, and later won, The Costa Book of the year. It's a first novel written and is a very clever story about family, loss, guilt, mourning and mental health. Nathan is a psychiatric nurse and his observation of life on the psychiatric ward and community care through the eyes of Matthew, his 19 year old protagonist.

I don't want to say anymore because it would spoil it and I couldn't recommend this book any more strongly. It is a total page turner and made me happy I was up all night with Wills to read it. This book was the one that made me rethink how I was writing my own book and, although I don't want to use the same format Nathan has used in mine, there is lots I took away about how to address some of the situations in my own story.

While The Shock of the Fall became the friend that kept me going over the last few week, previous weeks have been accompanied by the girls finding out that 'Orange is the New Black.' This is a fantastic series on Netflix about a middle class woman, Piper Chapman,  who ends up in prison in the US for a crime she committed 10 years ago. It is hugely entertaining, as well as exciting and poignant at times and I could really identify with being 'imprisoned' with people who you wouldn't normally spend so much time with out in the real world. I loved it and was gutted to reach the end of the season. I really missed these women in my life when it was over and can't want for Season 2 coming in June.

When I was googling to find out more about the series, I discovered it was based on a book, an autobiography by the real life Piper (Kerman rather than the fictional Chapman). The series is very heavily fictionalised but almost every character and situation has its routes in the real life experiences Piper Kerman writes about.

I found it fascinating to see how the series pushed these facts and the path of  'what ifs' that could have led to the fictional stories in the TV series. Once again, I found this hugely influential in helping me to think beyond the things I experience, the things I've been listing and noting over the past few weeks and how I could push the reality and come up with scenarios that will make exciting and interesting fiction that is underpinned by the facts of the world I am trying to recreate and inform people about.
I can't wait to get writing now and can't think of a better day than World Book Day to get stuck back into my book. 

Thursday, 20 February 2014

Second Home

The best thing happened as Tuesday night turned into Wednesday morning! I was watching a DVD on my computer (Cool Runnings - awesome film that has to be seen during the Winter Olympics. I, like so many, have so much love for the Jamaican Bobsleigh Team)  when I saw something flash up. Free WIFI has come to the Ronald McDonald House I live in when I leave the hospital in the evening. This means several wonderful things. It means I can blog more regularly as I now have some precious online time without fighting Wills for it while he watches endless Thomas the Tank Engine remakes, reviews and collection haul videos on YouTube so do watch this space more regularly from now on. It also means I can stay in touch with people more easily, get some work done and watch iPlayer and the like, all in all, it means I am connected with the world at the time I feel most isolated.

Ronald McDonald House is an incredible place. It's home from home and a much needed escape from the ward. I sleep there, cook meals there and bring Wills over when we have periods off treatments and with no physio or other therapies going on. Here he can play with their vast collection of wooden railway while I make lunch and get some work done (much easier now with the WIFI too). It's as close to being at home as it gets when you are living in hospital in another city. McDonald House is not funded by McDonalds. It's a charity and one that makes a huge difference keeping families like ours together when we need each other the most. The rest of the family can come and stay there too as often as they can and when my girls were younger we all moved up here together. Now they are older, in critical exam years and need to stay in their own schools. I really miss they days we were all up here together.

While we were chilling at Ronald McDonald House on Monday we were called back to the ward. William has been in a cubicle since we got here as they needed to rule out infectious viruses and infections. He is clear of these now and I knew we would be one of the first out of the cubicle if it was needed. We had to come straight over and pack up our six weeks worth of things, take the cards off the walls and move.  I am a bit of a nester and I need to make a little home for us when we are in hospital. We used to live for months in Chelsea and Westminster Hospital which was very close to a Cath Kidston shop. We had an end bay space with a window cill and that was always organised with piles of books and Cath Kidston tins bought in sales. If I could have candles and incense in our hospital and Ronald McDonald rooms I would! I miss the smell of incense so much I'm tempted to buy some just to smell unlit. I've built a literal grotto when we've been in hospital over Christmas. I really need to make our clinical environment as homely as possible.

Christmas 2011

It felt a huge upheaval to pack up. I had created a home for us in that little room. A home where we could shut the door on the ward when we snuggled up to watch a film and it was just us. A home where we could live to William's routines as much as possible without the ward hustle and bustle. William has Asperger Syndrome so routine is paramount to him and he gets very anxious when it is upset. Wills stomped into the ward demanding who had 'thrown him out of his room' and insisting he was not moving. I was really worried he would have a huge meltdown but he settled quite quickly. We have a window cill so I have a little pile of his books there and my room over at the Ronald McDonald house has a pile of my own, together with a few photos. I have some little nest and it's really quite nice being out on the ward with more people to talk to. 

Friday, 14 February 2014

Groundhog Day

Oh dear, my plans to blog daily have failed again!  It's been over a week since my last post. It's not that I don't have ideas. My lists of ideas grow daily. I do find it hard whilst living the hospital life to find the brain space to develop ideas and put them into the kind of sentences I'm happy to share with the world.

I think we've been here six weeks now. I's need to look at my diary to check that for sure. I've reached that stage where the days begin to merge into each other and, at times, you forget what day it is. Thursday's are easy as their arrival is heralded by the weekly fire alarm checks. Weekends are also easy. The consultants come round earlier and always look more relaxed than in the week, usually in jeans ready to go home and chill with their families and hope not to be called back to emergencies. As long as your child is stable, nothing much happens other than that. Weekends are long and often the hardest times as your mind is invariably on home and the people and activities you'd usually share weekends with. Other days tend to be very similar.

Usually, by now, we'd be in a routine. I sleep in the nearby Ronald McDonald House and arrive back on the ward to Wills first thing at about 7.30. We watch some TV, eat breakfast and get ready for the ward round, physios, teachers and other visits. William usually goes to school at 9.15, comes back for lunch at 12 and back to school from 1.15 - 3.15. During those precious hours I can think, write and work. That's the usual pattern long admissions with set backs since William's transplant have taken. This time it's been different. We've had loads of tests, each one bringing a change of plan. Wills has been ill with pneumonia… Two days ago, finally, we've been able to establish a routine of school from 1.15 and two precious hours for me to get back into my workspace again.

Routine is a good thing but 'over routine' can be the thing that really drives me crazy in hospitals. I remember a time before transplant when we were living in hospital and had been told we wouldn't be able to leave until after William's transplant. We had no idea how long that could be and so it really felt like a prison sentence with no release date in many ways. For weeks on end the exact same people would come into the room at the exact same time saying the exact same things. They were lovely people saying lovely things. At 8.15 the cleaning lady came in every day with "Good morning William, you are better today!" in here lovely cheery Indian accent. The play specialist peeked her head around the door in the exact same way at 9.00 saying 'Hi Guys' with the exact same intonation… and so on. Lovely people doing a fantastic job to brighten our day, but for me it really did begin to drive me crazy. It was like Groundhog day, it really was. Every day, day after day, exactly the same. Those things used to start really annoying me and I used to jump in quickly to change things. To quickly jump in and say something to the cleaner or play specialist to prevent them from saying their usual greetings or do things that we did in the mornings in a different order.

For now, I'm welcoming some kind of a routine so I can 'bag' the spaces where I can have a bit of space and do the things I need to do. Now I've found it I WILL pull my socks up from now and get writing. I'll be making sure things don't get over routined though…

Wednesday, 5 February 2014

You've Got Time

When we say things like, "see you tomorrow at two o'clock" or "I'll be back in five minutes" we always assume that the passing of time will seem the same for each of us. If it's the dentist I'm seeing tomorrow at two I can guarantee that time will pass faster than if it's a good friend I haven't seen in ages. I've just read this interesting piece on the psychology of how we perceive time.  I think here, I could really do with a clock like this. For me, right now, it seems like time is running away and standing still at the same time.  It's hard to comprehend we have now been in hospital for nearly 6 weeks. Where on earth that time has gone I don't know. Yet, while it seems to have passed so fast it has dragged.  

We are waiting for a detailed MRI scan to see what is going on in William's bowel. Because there is still some concern about some kind of a blockage as he has so much green bile in his stomach, it has been decided not to try any feed until we have this scan. The scan was booked several weeks ago and the date we got was 10 days on from the booking. This was supported to take place last Thursday but, on Wednesday, a week ago today, Wills became very sick with pneumonia, probably caused by aspirating the bile that is confusing us all so much with its presence from his stomach into his lungs. Instead of being in the scanner, he was fighting to stay out of intensive care. The scan was re-booked and will now take place this Friday - a whole week and a day later. To the team here, this is a shame but it's a week we are still working on the pneumonia with lots of IV antibiotics, antifungals and lots of physiotherapy. For Wills, it's a week of frustration where his precious play time seems to him to be stolen by all these extra treatments. For me, it feels like a week of time suspended away from home and the things I should be doing. Eight days seems a long time right now to be standing still. I've spent some of this time watching 'Orange is the New Black, 'a US series set in a women's prison so something I can relate to quite well after spending so many long hospitalisations before William's transplant living on the same ward with the same group of mums for month after month. I'll come back to this in a later blog. (Orange is the New Black is on Netflix and I strongly recommend it) I love the theme song to the show, 'You've Got Time' by the amazing Regina Spektor. 

One line makes me stop and think every time I hear it;

"Taking steps is easy, standing still is hard." 

It's so true for me. I like to keep moving, keep busy so I don't have to think too much. There is a lot of time when you're in hospital with a child. When I look back over the last six weeks it feels like a lot of that has been wasted. It's not always easy to make the most of every minute when things are stressful but I really need to be able to look back on this time when we are home again and life is back to a relative normality and see that I did something productive with it. That there was something concrete that I achieved. For me, I hope it will be substantial progress with my writing such as a large chunk of my novel drafted or a radio play drafted. Another long term mum here was talking about getting stuck into sewing projects. At times I've knitted scarves. I did try a jumper once but it's hard keeping track of where you are in the pattern when people come in to do something and you need to drop it suddenly. 

Time is precious. You never get it back and you have to make the most of every moment of it, wherever life has thrown you to spend it. 

Tuesday, 4 February 2014


Life for me often feels like a complicated dance between two parallel worlds, the real one where my family, friends, work and most of the other things I hold dear in life are carrying on in relative normality, and the world of parenting a sick child. Most of the time, in recent years certainly, these worlds have been bumping along together pretty well in tandem. Since the start of this year, keeping everything cruising along has been a lot more challenging as Wills and I have been back in hospital, now in a city away from the one where day to day life happens.

This blog is all about my attempts to keep spinning all the plates I need to have up there on sticks in order to keep the family, and myself not only functioning but moving along in life. It's part of a wider plan to keep writing, keep the novel growing, keep finding and pitching stories to my magazine editors, keep my newspaper columns going… keep my brain and creativity going! I was doing pretty well too. I guess this current journey in our lives can be viewed as a bit of a detour off the mainline and onto a windy and bumpy branch line then. Well,  the last few days, have felt more like this…

Wills has been really very sick. It all came from nowhere. Without any warning I watched him crash down and down and the little nest of calm and routine I try and carve out for us when we were in hospital was invaded by emergency and chaos. My little man is one of the biggest fighters ever and is a long way back to how he was exactly a week ago, when all this started and when I was last able to find the space and in my day and in my mind to think deeply enough to string some written sentences together. The drugs, physio and ever awesome team of specialists at Birmingham Children's Hospital have done their job and rescued him from the crisis. The crisis wasn't all bad, it taught us all a lot about what is going on his body, the reasons why we have been in hospital since the start of the year and, I hope, some ideas about the solutions that will get him well and home again. I can see the positives but I am still left feeling derailed from the track I was on. In an emergency, you just do what needs to be done. You walk beside your child to scans and x-rays, help staff with oxygen masks and accessing his Hickman Line for drugs, help encourage him to engage with painful and difficult physio, despite him feeling completely wrecked. When he is awake, you try and distract him but when he's sleeping all you can do is watch. There seems to be nothing left in your mind or spirit to be able to think about anything else. It's shock really and, when the crisis is over, that shock takes a little time to dissipate. I've written this though so I must be on my way. Now to find that 'to do list' I wrote this time last week. Where was I…?

Tuesday, 28 January 2014

Please Don't Call Me Mum!

We spent the first 80% of the first four years of my son, William's, life in hospital. The rest of it was spent juggling complex medical treatment, including intravenous drugs and intravenous feed (TPN) - a treatment only the very highest qualified nurses perform in hospitals. 

A world often condensed into one room 

After William's transplant in 2008, which you can read all about here  (scroll down to November 2008),     we have only had two (now in the middle of our third) long spell in hospital.

When your life is compressed within the walls of a hospital, it can be a huge fight to maintain your own sense of identity. Of course, the child is at the centre of your world, and the focus of the team looking after them and that's just the way it should be and the way you'd want it to be. The juggle between the needs of your child in hospital and any siblings is an impossible one to manage, leaving you feeling constantly guilty - about leaving the well siblings when you're at the hospital and leaving the poorly one when home. I'll be coming back to this in later posts.  What is less talked about is the juggle between your own needs as an individual. I have a book that talks of parenting a sick or disabled child as 'extreme parenting,' making us 'extreme mums.' People often refer to mums in this situation as 'super mums.' We play the role of mum, nurse, physiotherapist, occupational therapist, dietician, pharmacist and more for our children but, amongst all of that, we are us, individuals who have our own set of dreams and ambitions, often forced on hold or given up on with the diagnosis. In the past, I have let that happen time and time again but, this time, faced with the start of what looks set to be a year that takes us back to a life close to the one we knew before William's transplant, I am determined not to let that happen again. My dreams and ambitions for 2014 will have to be adapted sure, but, this time, I won't give up.

Living in a hospital is life in a vacuum. Small things that would normally just irritate you can become massive issues. One of my biggest pet hates is being called 'mum.' In past years I think I just found it a bit patronising and weird but, looking at it again it is so much more. By calling women who are living in hospital with their children, and the men for that matter, 'mum' or 'dad' staff are reducing them as an extension of the child. Someone who is there to play a role, just as the staff are, within the care of the child and running of the ward. I have lived for eight months at a time, sleeping virtually every night and being there every day with nurses who still called me mum. After time it can make us think of ourselves as just mum and forget the 'me' who has needs of their own. Since talking about this with other women many have agreed, even thanked me for voicing what it was that they were struggling to put into worlds themselves about the same. Everyone I've talked to about it said they hate being called mum too. Sure, it's necessary when someone who doesn't know your name needs to address you but, over time, just as they learn the child's name they could learn yours. No one calls the child 'patient!' I must say, most of the team we are living amongst in the liver unit at Birmingham Children's Hospital take great care in learning about the whole family. Their reward is that they can share in the rich tapestry of their patient's lives and take interest in the personalities, talents and goals their parents and siblings have too. As a result of this, we are all one big family who celebrate and hurt together as children receive transplants, get better and, at times, have setbacks. It really doesn't take much and it makes a huge difference! William has suggested that the resident carers name is written on the door or bed space along side the child. What a great idea! I think children's wards across the UK should take it on board.

Monday, 27 January 2014

Happy New Year!

Happy New Year! I'm a little late in wishing you the best possible start to 2014 I know but it may be that you have just discovered me and my world by arriving at this blog post, in which case, I haven't had the chance to wish you this before. If I do know you, other than the per functionary Facebook status around midnight on January 1st, I probably haven't had the chance to wish you this either.

On 31st December, I wrote a Facebook status declaring;

"At midnight today, we will be able to officially celebrate the first year in William's life ever with no emergency hospital admissions. Been a few close shaves but we made it!"

The next day, William woke telling me he had gained weight over Christmas. William is tube fed overnight and, other than 'chip shop chips,'  crisps and milk, has very little else, Christmas or not, so I knew that wasn't the case. "I can't even bend over," he explained. I looked up and saw he was right, his tummy was huge and rock hard. He had eaten some chips the night before and it turned out they had blocked his bowel and took all day to work their way through, undigested, into his illeostomy, the end of his small bowel that comes out through the skin on his tummy and into a bag.

Overnight on January 1st William lost two litres of fluid through his stoma. Our protocol is to contact his specialist transplant team if it's over a litre in 24 hours! My celebrations of a year clear of emergencies was clearly not going to last into a new one. By January 3rd, Wills was lying on a trolley in A and E unable to tolerate any food or fluid into his bowel and so dehydrated he was in renal failure. He is now well hydrated, thanks to IV fluids. We are currently residing at Birmingham Children's Hospital with the specialist team that have looked after William since his transplant in 2008.  His bowel still isn't working and he's being fed by TPN, a specialist feed comprising every nutritional element he needs,  delivered by drip straight into the main blood stream.

On Wednesday, William will get a Hickman Line and I will be in charge of taking care of a line that, if handled wrongly, could introduce an infection or air bubble that could kill him. There is every chance he will go home needing TPN for a while. We have been here before and, with the gift of hindsight, I can look back on the lessons I have learned. There are many medical and clinical lessons, such as limiting the number of people who access the line to limit infection (read, only me and nurses I trust 100% are allowed anywhere near it!) But, more importantly, are the lessons I have learned about myself. It is all too easily to loose yourself, your own identity, spirit and creativity in this sanitised, medical world full of procedures, life and death treatments and worry. I have let this happen to me before and this time round, I am determined not to.

This blog will follow my quest to remain Sarah, a writer and creative individual with her own dreams, hopes, ambitions and needs whilst living in hospitals, living with uncertainty and managing the complicated care of a child, alongside his emotional needs and those of his two older sisters. It won't always be easy to remember I am more that just William's Mum, and to remind other of that fact too. I know but, with some care and a lot of juggling, I know that this is still going to be a Happy New Year!