'What is normal?'

I have been pondering all day whether or not to deviate for a blog to share one of the many lessons I learnt on this journey. I have called the blog 'Willies journey of faith' - and Willies faith becomes increasingly evident as time passes. This journey we walked together also increased my own faith tenfold.

I would encourage any of you who feel nudged to step out of your comfort zone...for often it is in these 'unlikely' places that we can be truly Blessed. If we walk in our usual footsteps secure in what
and whom we know..we may miss out on insights that are truly breathtaking.

The craniofacial ward at the Radcliffe Infirmary aka Leopold Ward was a world like no other. It is a specialised ward for anything from a hare lip operation required to the most disfigured face you may
ever encounter. Thankfully the majority of us would never be aware of its existence because our children were born 'normal' . But what is indeed normal?

I'm not trying to open a can of worms or even give an opinion - political or otherwise...but witnessing
the abnormalities on these tiny infants, what struck me more than anything was the fact that without any doubt the parents loved these children...and definitely by the wistful look on their faces saw them as beyond beautiful.  Looking adoringly at them were young teenage mums cuddling their babies and
nurturing them, looking sad when they were going off for yet another operation, and sitting unmoving, watching intensely as their children returned to their beds/cots recovering with bandages wrapped round their small heads, feeding tubes up their noses. Unwavering dedication and pure love.


These were not the babies they had dreamed of giving birth to, they had not anticipated spending weeks or months on Leopold ward in Oxford..maybe miles and miles from home. But this was where
the top specialists hung out...incredibly gifted, talented and knowledgeable - recently I saw a programme on the Children's hospital at the John Radcliffe which replaced this hospital..with some of the surgeons that had operated on Willie.

For these parents it was a safe haven, the doctors and nurses were all outstanding in their humility, kindness and professionalism. I marvelled at both the inpatients and the staff. A world removed from
normal life but a world that made the very best of a very difficult situation. I salute anyone going through the pain of watching their children undergo sometimes extensive surgery and I salute the staff that make that experience the best it possibly can be.

There was a three year old girl in the bed opposite Willie on my very first visit. I will be honest - I kept looking, watching I couldn't help myself. I watched the parents motivating her, cuddling her, fussing around her, the love shining like a neon light, almost blinding.

Bella (this was not her real name as I do not feel it is respectful for me to write about anyone without permission) was an identical twin that had been born with her brain coming out of her skull. She had
undergone numerous operations since birth, including making a skull and giving her a forehead, making her a new nose as they had stretched her skin to the top of her scalp. Her scalp was large and protruding and her hairline started halfway back across her head. They had done the very best they could to model her face to be 'as normal' as it could be.

Bella was also limited in her movements and couldn't walk or talk and therefore was learning sign language. I'm ashamed to say I did stare again and again just trying to fathom what they had done, to
give this little girl a chance of a life to be enjoyed rather than endured. Her mum and dad were intent on making her feel loved and cherished and were doing an amazing job.

On one visit I was making a cup of tea in the parents kitchen,which was an incredibly small space. It
had a fridge, kettle, a few cupboards and a microwave. There was only room for a couple of people at a time. Bella's mum and dad were waiting by the door, her mum  holding Bella in her arms. I smiled and stepped outside whilst waiting for the kettle to boil.  Instead of going in they stopped for a chat...we had got acquainted in passing on the ward, and so chatted easily and comfortably.

As I stood there Bella put her arms out towards me, I looked questioningly at her mum to see if it was ok for me to take her. Her mum smiled reassuringly and so I took her gently into my arms. She was quite tall for a three year old but only slight so easy to hold. I was extra careful as I had no idea if she had any sensitive areas on her little frame. I smiled at her and she very gently reached her little hand
out and touched my hair with the greatest sensitivity I had ever felt from a child..or from anyone before - it was incredible....my heart melted instantly and her little face was transformed into incredible beauty. It was as if her beautiful heart was shining so brightly it lit up her whole being.

No wonder her parents had been looking at her with that adoring look, Bella was adorable. As I felt this overwhelming love for this gorgeous little girl I felt God really speak to my heart..."and this my
child is how I see you". Awesome. A moment in time captured in a critical illness hospital ward. A gem to be treasured forever. God sees us by our hearts, so if our hearts are full of beauty then we to are beautiful in His sight. A challenge to me there and then and a new found confidence. Never again would I worry about my appearance, my extra chins or spare tyres. It did not matter. This beautiful
child that I have deliberately nicknamed Bella had transformed my life in that one cuddle. Profound moment for me. I have often reflected on it...especially if I am concerned about my appearance at any time, I do remember that it's not important , what is important is to pray that my heart will be full of love, Gods love to share with others then they will see me as a God intended me to be...beautiful from the inside out.

Many years ago in our church there was a 7 year old brain damaged boy being passed along a line of people, mum,dad, brother, sister and back again. I remember seeing love like never before as they all
in turn cuddled and cherished young James. I remember thinking that we can learn so much by young people/anyone that is disabled mentally or physically because often the love surrounding them is so prominent and tangible you can see it almost in 3D. I have watched James grow up in body although his mind has remained the same and witnessed the amazing care and dedication by his awesome family. I often reflect on whether his brother and sister would have such a caring outlook on life if James had been normal. In fairness with their parents being so lovely I am sure they would have been. But I'm sure nurturing James gave them a bigger insight and empathy to those less fortunate than themselves.

So I go back to my original question...what is normal? Where is the line drawn, we can learn sooo much from such sad circumstance if we can accept everyone as 'normal' if we look deep into their
hearts we can find treasure beyond anything we have experienced before.

I'm not glad these babies are born this way, it is heartbreaking for the families, but I think we underestimate how much we can learn from them.

We had a stillborn baby boy 19 years ago with Edwards Syndrome, an extra chromosome 18...classified as incompatible with life. Our eldest son was five and second son three  at the time. They both came to say goodbye to their baby brother. I was a bit worried that they may be a bit frightened by his appearance as he did not look 'normal' . I needn't have been concerned as a few weeks later we were in the car waiting for a lady to put her baby boy in his car seat - so we could take her parking space. As we waited I said to Simon our eldest,  sitting in the front with me.."Aww..look son what a beautiful baby boy" ...to which he replied "Yes but not as beautiful as my Ben...no-one is as beautiful as him". Wow out of the mouth of babes.

I have no idea what happened to Bella, I only saw her once again, but I am certain she continued to Bless so many - as I know  James has, who is now 23 years old. I have no idea why or how these things happen, but I'm grateful that I trust in a God that does and who sees the bigger picture of which I am only a very small part.