Day Twenty-two

1. New Month Positivity 

It’s a new month and I am feeling quite unbelievably positive. It’s been just twenty-two days since I started writing this blog and my state of mind is in just a different universe to how it was at the start, despite the fact that we are in the same position, if not a little further down the line. William’s bowel is struggling just a little more, he is a lot more tired and worn out than he was three weeks ago. He crashed out in the car on the way home from his friends after trick or treating just a short way down the street and took himself to bed at six o’clock this evening after a day of doing not much more than resting and doing a bit of art and craft together.  The phone will still ring at any moment and we will travel to an operation that still holds the same risks. Yet I still feel very calm about things.

Writing has always been therapeutic for me and helps me delve into my thoughts and understand them better. I have read several times that you know you are a writer because you just have to write. You can’t stop writing. This is certainly true for me right now. Not just here but also my novel, journals and other scribblings. When I’m not with the children I am either writing or reading it seems. Writing opens up my mind and leads me to things. Even the spiritual journey I am on right now has come about because of the self-exploration that comes from writing. When I was first diagnosed with my hearing loss back in the summer the doctor said that he thinks I became so in grossed in my world of books and paper because of my hearing. It was a lot easier for me to seek entertainment and communicate this way because verbal communication can be a challenge. I think that is right and I consider it a gift. I’m glad I didn’t have my hearing corrected at a young age if it would have meant that the written word wouldn’t have been such a huge part in my life (although I would have liked a bit more confidence in taking with strangers and talking on the phone but I’m sure that will come with time now I have the hearing aids).

I think, above all, I feel calm because this is the first month all year really where we haven’t been waiting for William’s bowel to improve and for answers. It has been worrying and frustrating thinking his bowel would start to work again and, instead, watching it slowly decline. We wondered if there would be more tests, more things to try. Then, in July, we were told that it was time to start thinking about the re-transplant so we were waiting for decisions on that, and then decisions on what organs to transplant… It was such a huge decision for the team and for us. We had to get it right and that took time, consultation and a lot of care and effort from our time. So, finally, we are here in November, coming towards the end of the year and all of this uncertainty and decision making is done. We know what we are up against. We don’t know what it will bring for sure but I am feeling more and more positive about the outcome.

2. I am not waiting 

On the fifth day of this blog, I wrote a list poem about waiting. I thought it would be fun today to write one in reverse. I am really making this up as I go along as a bit of an experiment.


I’m not waiting for medical test results
I’m not waiting for results of any kind today
I’m not waiting for hope that my son’s failed bowel will start to work again
I’m not waiting for any decisions
I’m not waiting to decide
I’m not waiting for an answer
I’m not waiting for you to say you love me
I’m not waiting for inspiration or an idea to come
I’m not waiting to spend time with my muse
I’m not waiting for a guru
I’m not waiting to be encircled in friendship
I’m not waiting to feel loved
I’m not waiting for bread dough to rise
I’m not waiting for it to stop raining

I’m not waiting for things I thought I was waiting for
until I realised I had them all along

3. Embracing the World 

I thought I’d finish today by taking you with me a few more steps along the spiritual journey that I seem to be walking along side this road towards William’s re-transplant. It wasn’t a journey I was expecting, although it was one I knew I needed to take, especially after the ‘trantrum, tears and brandy night.’

If you’ve been following the blog you’ll know that I read Eat, Pray, Love and was hugely inspired by it. I asked for a guru and Amma appeared on my Facebook wall. I read about her, read her biography, did some research and felt all the more drawn to her. Then, on Wednesday, I got to hear her speak, take part in her Devi Bhava, be hugged by her in darshan and get my own mantra from her and make her my guru.

Today, I’ve been reading more about her amazing humanitarian and charitable work with Embracing the World. It is just incredible! It is no wonder that United Nations, along with many world leaders, have given her accolades and praise.

When she was welcomed in Ireland yesterday, the MP, Thomas Pringle said

 “Amma has directly touched the lives of 33 million people around the world, passing on a message of love, respect and positive energy to each and every one of those people. If each of those 33 million people could pass on the same message in their daily lives, just by doing the simple things, making time for each other, and sharing compassion, I think we could effect a real change in the world.”

Challenging words that I am going to do my best to take on board. I am so privileged to be one of those 33 million people Amma has hugged and it really does make a huge difference in life. I have never been very good at meditation and prayer but I have been true to my commitment so far and have found it really beneficial to spend half an hour meditating on my mantra, what God means to me and how I can be a light of that in the world. I am a real beginner in mediation and hope to do a day course soon to learn more. What is fascinating, and reassuring is that, when it really works and I have really been able to empty my mind, my meditation takes me to the same experience that I have had when I have felt more traditional Christian prayer has taken me close to God. In fact, when this first happened I found myself joking and saying; “Oh, it is you! Hello!”

I’ve been thinking more about what I experienced on Wednesday and how I saw a woman with an amazing sense of peace. There was no hype like you can get around some religious leaders. Everything about that huge room, the thousands of people there and Amma’s monks or swamis was calm and peaceful. Her teachings are all about losing your ego and being compassionate and loving. There was no monetary cost for the programme and there is no cost for any of the retreats, mediation courses or staying in the Ashram, other than to cover cost of food. Amma has a sense of humour and joy and there is just no way, no way a woman in her late 60s could do what she does and hug people for hours and hours on end. The evening session on Wednesday was more than twelve hours long throughout the night and she had not a minute’s break from hugging and will carry on until everyone who has come for a hug gets one. Only then will she stop, take a break, eat or journey to the next venue when she is on tour. The rest of the time she is at her ashram.

Whatever one may believe on a spiritual level, this is a lady doing an enormous humanitarian good, spreading unconditional love and peace on a level that I don’t think the world has seen. The rest comes down to faith and she has followers from all faiths and walks of life. He biography is a fascinating and inspirational read for anyone and my second book recommendation of the blog.