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.