Tuesday, 11 November 2014

Day Thirty-Two

1. There is power in words

One of the things Wills and I share is an absolute love, an adoration in fact, for book shops. We are blessed in that there is one of the biggest Waterstones I know within easy walking distance, and quick enough to get to in short IV and TPN breaks, from Birmingham Children’s Hospital and our other ‘pad,’ Chelsea and Westminster has a lovely Daunt Bookshop even closer, just a few doors down. One of our favourite hospital treats is to escape the clinical, hustle and bustle into the calm and peaceful world of a bookshop. We love to browse and get ideas but we both have a terrible weakness for buying books too. I always think it’s a purchase easily justified too as a book is such a wonderful and important thing to have. We both have quite a collection of books we have purchased during long and difficult hospital stays. They are the best pick me up out there.

One of those books is this one.

The title leapt out at me as this is how life so often feels, and not such little detours either! Like Eat Sleep Pray, this book has been sitting on my shelf pretty much untouched until I picked it up today. It is a collection of the author, Regina Brett’s column she wrote as she turned 50 on the 50 things life has taught her, reflecting on everything she had learned through her life as a single mother, her experiences of love, surviving cancer and making her peace with a difficult childhood. The book is subtitled, 50 lessons to find and hold onto happiness.

Each of the 50 chapters is a short read, just two or three pages.  The first chapter centres around Frank and his ‘chemo hat,’ a baseball cap with ‘Life is Good’ written on it. Frank passed the hat onto Regina when she had her chemo and she, in turn, passed it on to many of her friends, who also shared it. Every single one of them survived cancer. One of them, Patrick, got all his family and friends to pose in the hat and covered his fridge in their photos. You see, it wasn't that the hat was lucky. It was just that it helped everyone to remember life is good and to keep their spirit and optimism going. A bit like having a positive mantra. There is power in words.

2. Get to it!

Frank also had another trick. He called it living by the the words ‘get to.’ Instead of saying, ‘I have to go to work,’ or ‘I have to go to the supermarket,’ he would say ‘I get to go to work,’ and ‘I get to go to the supermarket.’ I think this is a lovely way to live. It is too easy to forget that living is a privilege. We have met too many children who have never got the change to grow up and go to work or trudge round the supermarket. We should all live by ‘get to,’ and change the way we view and talk about our worlds accordingly.

I had a huge wake up call that taught me to do just this. It was during our long hospital stay at the start of the year and when we were stuck in Birmingham, waiting for a bed to get back to Chelsea and Westminster to stabilise William’s home TPN, get the contract set up for it and for me to be trained to do it again. It was a really hard time. We’d been away from the girls for three long months, it was a huge and unexpected setback, I was gutted that we were back on home TPN again - gutted for William, for the girls and for myself knowing all that would bring. I was also upset at the thought of having to go back into the hospital we virtually lived in before William’s transplant and where we had experienced such a frightening and often traumatic time. I shared my feelings on Facebook and was met by the usual, ‘thinking of you’, ‘be strong,’ type of responses that are great and really boost me. I was stopped short though when I read, among them, a comment that simply said, “I miss those days.” This was from one of the mums we got really close to a few years ago when we spent time in Birmingham together. Her daughter was really sick at the time, in fact one of those moments I will never forget is standing in a corridor holding her as the crash team worked to save her little girl right in front of our eyes. Sadly, this little girl died waiting for her second transplant - another angel gone far too soon because of the shortage of organ donors in the UK. I felt so humbled and ashamed of myself. I had no right to be complaining about something that so many of our friends would give absolutely everything to have back in their lives. I check myself now every time I begin to complain. I remember those words, I see my friend telling me them face to face and I see that little girl.

Life is a gift, even the bits we don’t like. We ‘get to’ do everything, even the hard things, the boring things and the chores. Try living a ‘get to’ life. I am going to try even harder to say that every time I’m about to moan that ‘I have to’ do something;  ‘I get to get up in the middle of the night to change William’s stoma bag,’ ‘I get to worry about a leaking roof,’ ‘I get to wash up every day.’ It works! You try…

3. 'No caller id'

When we get the call, it will almost certainly be a 'no caller id' so you can imagine how I felt this afternoon when suddenly three of these came unexpectedly within an hour. As I've been writing a lot about words today I decided to play with words a little bit here. 

The phone flashes up
‘No caller id’
My heart gives a shake
knees buckle and quake
A nurse calls for a chat
about this and that
It wasn’t THE call
this time

A second time, flashing
‘No caller id”
Another nurse, this time ‘continuing care’
needs to come round and share
new care plans and thoughts
and hear our reports
It wasn’t THE call
this time

A third time it flashes
‘No caller id’
It wasn’t for me

If you are not on the organ donor register, please do click here for more information and to sign up.

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1 comment:

  1. Thank you for sharing your journey with me. Tomorrow I get to go to work, but you are all in my thoughts x