Sunday, 14 December 2014

Day Sixty-Five

1. 'Darly Dair'

Today I managed to prize Wills off the sofa for a very exciting party at London Zoo. The Zoo is in the middle of Regents Park and about as far away from a tube or bus stop as anywhere in Central London can be and I knew there is no way he would be able to walk that far. He’s been struggling to get around and just a short trip out can wear him out and is impossible for him on a bad day. So, this morning we pulled out ‘Charlie Chair’ or ‘Darly Dare’ as William used to say, down from the attic and brushed off the dust, and an old dried up chip from the days before his first transplant when he used to lick and smell them.

Wills greeted his chair like an old friend with clear relief and excitement at seeing it again. He hasn’t used it for a very long time so I was relived he fits in. He could do with the footplates dropping a bit and it’s not the best chair around these days. It’s very heavy as I found out today. Pushing him in this is certainly going to burn off my Christmas calories. But it will do us for now while we wait for his transplant, although I will get him referred to the wheelchair physio in case our wait is a long one.

I felt sad seeing the chair back in the hallway but just walking up the road to the tram was so much easier than it has been for a while now. We’re having to walk really slowly and keep stopping and so eave extra time to get to places so we’re not having to rush for the tram and train. He’s been complaining his legs are tired and hurt all the time. Having the chair down again will enable us to do more and, as Wills showed me today, he can even fall asleep in it. I’ll still get him to walk on good days and short trips though to keep him moving. He’s got a big operation coming and he needs to be in as best physical shape as possible, although being exhausted is no good either.

For now, Charlie Chair is back in our lives and, with him, comes re-discovering how to travel around London without the tube. Today we crawled from Victoria to Regent Street. It was slow but that really nice because it took us through the lights in Oxford and Regent Street. The New Bond Street ones are amazing. It’s nice to see where we’re going, even though it takes a while longer.

 Like a lot of things in life right now, it’s about making adjustments but there are good things to discover hidden within these tweaks.

2. Embracing my winter mind

One of the big adjustments we’ve had to make over the last few weeks is to spend more time having cosy Christmasy days at home rather than trying to rush about and do loads of Christmas activities out and about. Knowing we had the party to go to today, Wills and I had a movie and sofa day yesterday. In between Star Wars and a very twee Christmas film about Santa and dogs dressed as Santas (during which my friend came round and saved me from having to watch any more)  I had some time to read the latest ‘Psychologies’ magazine yesterday whilst he was playing a game on his iPad. There is a lovely feature in there called ‘Feed Your Winter Mind.’

At this time of year, we are all stuck on the magical side of the season, suspending our disbelief in a winter wonderland of Christmas miracles and festivities. Snowfall during this phase of winter is welcomed as a beautiful carpet and glittery decoration that turns our every day world into a scene from the front of a Christmas card. Come the middle of January and into February that snow takes on a whole new form as we remember that winter is a harsh season, full of struggles and long grey nights. In the age of central heating and electric lighting we can escape the full harshness of winter our ancestors faced and it could be that this has led us to lose an important aspect of the season. The oldest metaphor for winter is the end of life. The feature writer, Rosie Ilfould, challenges us to embrace that ancient winter mind and see the season as an opportunity to look at our lives, accept that some of our old life has gone and recalibrate. After all, this is what nature is doing with much plant life appearing  barren and dead on the surface where there is re-birth and re-growth going on under the surface, ready for the spring.

As I read the feature, I thought of how in tune we are with the seasons in our lives right now. We are enjoying that cosiness and the magic of the Christmas tree and fairy lights dominating our living room. Yet, at the same time, we are having to accept a lot of our life has gone, at least for now. For me, the key things are the freedom to be flexible, to be able to guarantee I will be at a meeting or play rehearsal and to accept there is a more limited supply of energy and concentration left for everything I’m trying to achieve in my work and creativity. I spend a lot of time fighting this and trying to fit everything in somehow regardless, and then getting upset and feeling I’m letting people down when I just can’t be there or do something I promised to do because Wills is home from school, isn’t having a good day or because I’m shattered after a night disturbed by multiple bag and bed changes. A huge part of the journey I am sharing on this blog is about accepting things as they are and learning to roll with it, rather than work around it. I’m recalibrating life and finding a lot more peace and productivity in all areas as a result. It’s a process that is no where near finished yet. Like the roots under the frozen soil, my hidden mind is still working out and brainstorming ideas. It will do me a lot of good to treat this winter as a time of recalibration and be ready for new life and for new ideas to come to fruition in the spring. New life and ideas that work with the life we are living right now, not idea that I’m constant struggling to fit in around it.

The feature suggests activities such as reading poetry and essays, resting by open fires with big chunky novels and journalling as perfect activities for this winter recalibration. Sounds wonderful to me!

3. Believing in magic 

The party we were at today was the Believe in Magic Christmas Party. Believe in Magic are an amazing charity. They do such wonderful things for children like Wills who are poorly and face uncertain futures that they really do make us parents believe in magic. They make magic happen. William’s most treasured iPad was given to him by them when he was adapting to so much time on TPN at the start of the year and we have been lucky enough to go to several wonderful parties. Today was another wonderful day. We had snow fights, saw real rain deer, decorated cakes and biscuits, had champagne (well I did) and got to spend some time with some of the wonderful friends we have made over the years, other families who know just how we feel because they are living similar lives.

It was a truly fantastic day, even the hour we spent walking in the complete wrong direction around the perimeter of Regents Park, me trying to juggle pushing Wills in the wheelchair and carrying a huge box of Star Wars goodies. We ended up having to walk all the way to Great Portland Street to find a bus stop! I need more practise at this tube free travelling clearly.

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