Friday, 5 December 2014

Day Fifty-Six

1. Another Friday, One of the lucky ones

Another Friday already! Where on earth has this week gone?? Maybe those strange noises so many of us heard on Saturday night were something to do with time stealing!

As always, a Friday marks another week on the transplant list. Another day when look back and think of all those people who haven’t made it to the end of this week waiting for transplant. Another day to be thankful and grateful that we are still here and Wills is still well enough to go to school and enjoy most of the things he loves to do. He may be needing more sleep and rest to compensate these days but remains as determined to live life to the full as ever. In fact, I’m not even allowed to say he has fallen asleep before bed time at 8.30. He won’t admit or acknowledge it. Instead, we have to say he was ‘deep in thought!’ Of course, he says that with his cheeky grin, knowing full well what the term is code for.

So we are full of gratitude today and my thoughts are very much with those 168 people who have died waiting for their transplants while we have been on the list, and the 168 families who are facing a Christmas without them.

2. Sharing tears and 'brokeness'

We’ve been getting ready for Christmas this week. We got our tree on Tuesday and it is already filling our living room with the lovely smell of pine oil. Today, I put up the lights and garland on the fire place. We have had these decorations for years and put them back in the same place every year. Woe betide me if I get the main features of our Christmas wrong, although we do enjoy adding a few things each year and changing some of the bits that complement the centrepieces - the real tree and the mantlepiece garland and lights.

This year I noticed too of the baubles, representing the holly berries on the garland, had broken and their remaining portions had become caught up with each other. They were so entwined that they looked like one bauble and I was confused for a while as to why I couldn’t untangle the garland. These two baubles made me think about how many of my friends who I really love and value as an integral part of my life share the same, or very similar,  ‘broken’ bits as me. Because we ‘get each other’ and understand these cracks and scars we are comfortable together and know the things each other will appreciate from a friend. Shared experiences are so very important and among these people are friends who have been on similar journeys to William and I with their own children and families.

I mentioned a wonderful book ‘Life’s Little Detours’ a few weeks ago. It is a book that I was drawn to during a book shop trip from hospital with Wills because the title seemed to sum up my life so well. The title alone helped me look in a different way at the stops and starts and different pathways I’ve been forced to take so many times when I became mum to a child with chronic health condition. One of the chapters in the book has the title; “Cry with Someone. It’s More Healing than Crying Alone.” I thought of that and re-read it after my little moment with the broken baubles. The author, Regina Brett, was once trying to conceal her tears in a counselling session and was told to stop. That they were beautiful and expressive. Tears are powerful and healing and even more so when they are shared and when we cry together with people who share the same pain. So often in life we hear the phrase ‘don’t cry!’ That phrase is something I’ve never heard said among my fellow broken baubles. When we see each other cry or are tell each other we’ve been crying you’re far more likely to hear us say good, it’s good for you. It’s something we should all do more as humans. Of course we all need comfort but offer the chocolate as comfort after the tears, rather than as a comforter to stop them.

3. Hope

I received a lovely parcel today which I will write more about tomorrow when I have had time to properly look at everything and think about it all. One of the items was photo frame that had the word ‘Hope’ on the paper serving as a spacer before the photo is added. It made me think more about the word and what it means. I was googling an image to go with a piece about hope and re-discovered this beautiful poem by Emily Dickinson.


“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

Emily Dickinson

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