Monday, 3 November 2014

Day Twenty-Four

1. Children's Hospital: The Chaplains - Our wonderful team!

BBC Two are currently showing a series called Children’s Hospital:The Chaplains. It is on Monday’s at 7.30pm and it’s also on iPlayer if, like me, this is slap bang in the middle of tea-time, medication and treatment time and bed time. The series follows our very own multi-faith Chaplain team at Birmingham Children’s Hospital, including Nick who is a central part of our family on the liver and small bowel transplant unit on ward 8. We see him in the first two episodes offering support and prayer to Lucy-Ellen, a baby from Northern Ireland, as her liver disease becomes critical while she waits on the transplant list. Thankfully, there is an option for live donation for liver transplants and Lucy-Ellen’s father steps in to donate a lobe of his own liver. Tonight, we’ll see how they get on. I could tell you now. I met Lucy-Ellen and her parents back at the start of the year when Wills and I were on ward 8 for several months trying to get his bowel working again and getting re-established on his intravenous feed, TPN. Lucy-Ellen was having an operation to fix the biliary atresia she was born with. This is a rare liver congenital condition, although when you spend as long on a liver unit as we have over the years it doesn’t seem rare at all as a large percentage of babies with it will come through our ward. The operation is a success for some, for other they will eventually need a liver transplant. Sadly, for Lucy-Ellen this decline came very fast. I was surprised to see them back on the ward when we went for William’s re-transplant assessment in August but I’ll say no more or I’ll give tonight’s programme away!

We have spent a lot of time with Nick over the years. The programme shows how he and the rest of the team get to know patients, celebrate the good news with them and support them through the difficult times. This has certainly been the case for us. We met Nick when we first arrived on ward 8 back in August 2008 for William’s first transplant assessment. I remember talking with him about how stressful it was being in a new hospital with new staff during such a big and important stay and not knowing what the team were thinking each day until the bug decision day at the end of the week. Then, a few months later in November, we were back on the ward for William’s transplant - a mix of a joyous time with the transplant itself very much at the 11th hour for Wills as he was so sick, and then worries and fears as we played a game of snakes and ladders over a three month stay for his recovery, a time with lots of set backs. Nick was very much there through it all, being able to spend the time talking with like nurses and other staff would love to but just don’t have the time these days as they run between medications, IVs, procedures and the needs of similar complex and poorly patients and families going through the same stress and worry as we were. Since that time, we’ve seen Nick when we’ve been in for setbacks and when we’ve been back for the shorter annual review stays in between. I know he’ll be there as soon as he knows we are back and in ITU in the early, scary days of William’s new transplant and will accompany us at the start of our new journey.

I have been, and will be, writing a lot about my own spiritual journey. It always fascinates me how people turn to God or their understanding of a The Divine Being who can help them when their life really hits crisis. It is this moment that started Elizabeth Gilbert’s journey in Eat Pray Love. There can not be more a moment of crisis than when your own child is in a life threatening situation. The multi-faith chaplaincy teams play an invaluable role in supporting patients, families and staff through these moments, in helping them directly in human support and also in helping them understand the impact their situation is having on their spiritual understanding, be that seeking, strengthening or even doubting and feeling confusion and anger towards a God or Deity they have been praying to and worshipping throughout their lives. I’m looking forward to chats with Nick about Amma and the journey I am on right now. I’m lucky too that the chapel is right next door to both ward 8 and PICU and so will be there for me, close to the wards, for me to seek peaceful refuge in and to spend time in quiet meditation and prayer.

The chapel has beautiful prayer trees and things to help prayer and meditation, such as stones you can leave at the alter as a symbol of leaving your worries behind for God or to take with you. I have a couple of stones on my desk from the time of William’s first transplant. One is smooth and I used to carry that around with me to ‘fiddle with’ and think about how it had been smoothed by the turmoil of oceans and storms. The other has cracks in it which reminded me of my own imperfections that need to be smoothed. There is also a prayer book where we write the prayers we want the team to offer for our children and families. This has always intrigued be greatly. As you write, you see other people’s prayers on the same page and, during long admissions, I will go back to see what the news is. Has that child so critically sick pulled through? This is real life, not a movie and so many of the children’s stories shared in the book don’t end in a happy ever after and I join in praying for their families.

The chapel prayer book inspired me to write a play which follows the lives of ordinary people coming into the chapel in a twenty-four hour period. In my play, everyone’s lives have been impacted by an event outside the hospital that took place just before the play starts and, although they don’t all meet, all the characters are linked by this. There is also a transplant and organ donation story line weaved in.  I’m currently rehearsing the play with HeBeSheBeWeBe Theatre Company. We were due to be performing it later this month but, with life imitating art and the pressures and stresses over the last few months, we have postponed to January. I won’t share any of the play here as it will spoil it for those who may come to watch but if anyone would like to read it please make a small donation  on the Go Fund Me site and mention in the comments it is for the play and I will send you a copy.

2. A Novice Meditates 

I mentioned meditation in the piece above. This is something I’ve never really tried until this last week, when I was given my mantra from Amma and taught a simple meditation around it. I am getting into the practise of doing it daily. I’m finding it isn’t always easy at all to rid your mind of everything except that which you are meditating upon, much as though I can already see how incredibly beneficial it will be when I can fully achieve this. At the moment, I achieve it for periods of time within my meditation before my mind wonders off and I have to steer it back again. I read today that rather than fighting with these things I need to acknowledge them as they come into my mind and then dismiss them. I’ll be trying that tomorrow but, for now, here is another of my ‘write it as it comes’ draft poems about trying to reach that goal of an empty mind when it is being assaulted by a random muddle of freewheeling thoughts….

A Novice Meditates

Ohm…Ohm…Will the phone ring?….What shall we have for dinner tonight?…We haven’t got much in actually. I must book at Tesco slot as soon as I’ve finished meditating. Ah yes, meditating! Ohm…Ohm…Has Ellie got enough lunch credits? Probably or she’d have texted me… Where is my phone anyway? Will we get that transplant call today?… Meditate…Meditate…Ohm…. William’s stoma poured out a bit last night. I wonder if his urea level is down a bit now. Bloods tomorrow. I hope it’s down a bit or he’ll need more fluids. That IV bag is so heavy for him I don’t want him to have to carry more fluids. I hope his nurse carries it round school for him today. His poor back…. Ohm…That output was very green as well…Ohm…I must remember to put his yellow rubbish bag out tonight…Right, come on! Come on! No more thinking….no more thinking ….Ohm …. Ohm….sitting cross legged really hurts…I’ll move….but I’m sure you’re supposed to sit cross legged…Ohm…Hmm, this incense is really nice. That Jasmine one was too flowery but this is gorgeous….What is it again? Frankincense? I must get some more….How long have I been doing this for now? I’m not really feeling anything… I need to learn how to do this better. I must book into a class. Where do they do mediation classes in Croydon? Buddhist Centre do but I’d love to learn in a Sanskrit tradition… I really like the chanting…I’d love to learn more. I’ll have a look when I’ve done my mediation…Ah meditation…. OK, I’m starting again. I’m doing this properly now….Ohm….Ohm….I wonder if the phone will ring today…..

(I will add as a footnote that I am getting a bit better than this now, I can chant my mantra simultaneously to all those gate crashing thoughts and I even have a few repetitions free of them all sometimes! I’m getting there. I’ll try the ‘accept and dismiss’ approach tomorrow.)

3. The Most Incredible Music I Have Ever Heard

When I blogged about my wonderful day at Alexandra Palace last week at Amma’s darshan and Devi Bhava I said I had heard music like I had never heard before. The Swamis singing and playing their Bhajans is really special and very peaceful and spiritually calming. The music that really blew me away though was music being played in the early afternoon by a truly remarkable cellist, Jo Quail. I love the cello and listen to a lot of its repertoire but I have never heard anything like the sounds and music Jo made. She plays the electric cello and has it linked to a series of loop stations and effects pedals. She plays a sound or phrase as a ‘loop’ and it is recorded in the station and then played back when she presses the pedal. Her complex set up enables her to create layers and layers of sounds that becomes an incredible music experience with sound all around you, just from one woman and one instrument. I was totally drawn in. It was just amazing, not least because it was the first time I listened to live music with my hearing aids. Part way through, I remembered that I had a music setting programmed into them and when I switched to that the sound really zinged. It was so just so full, blankets upon blankets of magical sound. Using a loop station means that you start with one simple phrase or sound and it builds up with each new loop layered on top like building blocks to the crescendo and then it can either finish dramatically or be stripped back down again. Together with this, Jo uses her whole instrument to make all sorts of interesting sounds, melodic and percussive. I can’t possibly put it into words but you can hear and experience it for yourself here.

That music with the incense and the peaceful, spiritual, meditative mood of the hall was a truly special moment in my life. I had to find Jo afterwards and ask if she had a CD, which she thankfully had. Coupled up with my hearing aids on the ’T’ loop setting and ear hooks, her album ‘Caldera’ sounds amazing. For the first time I can hear sounds being thrown to each ear. At the moment, I’m just using the hooks as an economical way to listen to music and use my iPhone while I get used to my hearing aids and the more complex equipment there is out there. I’m not sure yet if I will chose audio shoes or a wireless personal loop system but, I know I can’t wait to hear this, and other music, once I have one of these next year.

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