'Introducing Willie...

I thought it was about time you got to know Willie a little better...as it's his journey I'm taking you on...

Many of you reading this blog knew Willie and will have many 
fond memories...I encourage you to write your own memories in 
the comments for others to enjoy to.

I had forgotten just how many lives this little boy touched in his 
short time on this earth. Many of you have written comments on 
Facebook and I'm glad you are enjoying 'journeying' with me as we recall so many precious moments.

I have mused long and hard this week on how I can convey the 
complexity of a child that could act like the 3 year old he was when I first got to know him.. with the wisdom of a man far beyond his 
years.

For those who remember Willie...for those 'getting to know him' here for the first time..I will share some of my most poignant memories. And hopefully give you a real sense of what this little guy was about.

I realise as I was writing this first draft for this blog that each pastime Willie loved he loved so much it may warrant a whole blog for each subject! Because I don't want to leave it to long in between blogs and time is often lost in the busyness of daily life, I think I shall post each part separately. I hope it flows and makes sense.

The photo shows his cherub features and to look at him you would 
declare 'This boy is indeed an angel'. This cute exterior could have easily fooled any unsuspecting human to believe this was the case.
Having spent many hours being sprayed with freezing water from 
the garden hose..I would beg to differ!

This outward appearance hid a cheeky little monkey that giggled most when someone was getting wet either by hose or water pistol...or if you stood in front of his swing and he could kick you and make you fall backwards. He would delight in stomping on your nicely made sandcastle and howl with laughter if he managed to kick a ball in your face...yes Willie was a typical little boy. The difference was we would encourage him to do these naughty things because we loved to hear his giggles...and when he laughed it filled you with incredible joy. It was so good to see him enjoying life. 

Zoe couldn't bear Willie getting upset, and so if he wanted to spray 
you with the hose...you got sprayed..lots. It's very hard to say 'no' to your children when they are little...but how much harder it must be 
when they have a life threatening illness. 

Zoe was very worried about Willie banging his head, so we had to learn to follow closely - hands at the ready - to protect his skull if 
the need arose, it became quite an art - like a dance. So much energy was required running behind this little monkey, especially when he explored his favourite domain..'the garden'.

Whatever the weather, wellies on Willie loved to dig. And dig and dig some more. Muddy patches, sand pits..flower beds - digging and more digging..I'm surprised he never reached Australia. Their 
back garden was full of holes. Eventually at St Marks School they had a special digging area for willie to enjoy with the other children, and I believe it is now named after him.

Zoe endeavoured to take Rheanna and willie to a beach as often as she could manage - with her entourage of helpers. I will ask Zoe for some photos to post on here as I know she has many of happy times spent on sand and by the sea. A particularly poignant one of Willie using a banana as his imaginary phone. all curled up in his towel with a sunhat on...so cute.

Second to digging came swinging...for an hour at a 
time..Willie never tired of being pushed..the higher the better. The only reason he ever got out of the swing was because you would finally think of a better alternative..after offering several different 
options you would sometimes hit on one that appealed to him...and he would get out willingly. 

Fortunately his small frame fitted into the baby swings so there was no fear of him falling off. We would scour the parks in the Newbury area and in Oxford (when in hospital) for the swings with the longest chains.

Such excitement when we would discover a new park with big swings  - a gem to be revisited time and again. I can 
hear Willie huffing and puffing if a swing had been swung over the top of the frame several times in a tangled mess far outside of my reach. "Sue" he would say "those vandals should be put in 
prison..I'm going to put handcuffs on them and lock them up" usually there would still be a swing not vandalised for us to enjoy..but Willie would constantly refer to the vandals..he knew 
right from wrong and couldn't believe the big children could be so naughty.

Sunshine, wind or slight rain..we would run carefully hand in hand to the swings..or Willie would be in his pushchair laden with his latest favourite toy, some healthy snacks, a bottle of juice or milk...and 'the emergency bag'. I still have the emergency bag in a cupboard - Zoe or I couldn't bear to throw it away so it remains as was. Never more than a few metres from Willie wherever he went, in the bottom of the pushchair, in the car and eventually on a high shelf in the stockroom at school whilst he was in situ was the emergency bag..the last one a soft lunch box with a picture of a digger on it.

It contained an essential injection if he ever went into shock. His body did not automatically produce cortisol which protects you if your body goes into shock if in an accident or similar. The injection to be given instantly would save his life. Also his tablets required 3 times a day were in it that kept him going as his thyroid didn't work at all.  Also some hypostop if his blood sugar went low.

Thankfully we never needed to inject him, but as a precaution it 
was our constant companion. Woe betide me if I went out without it.

In the park Willie always headed for the swings first and stayed 
there until my arms were about to fall off from pushing or if there was a queue forming with other children asking about their turn and grumpy looking parents. As it was often the most relaxing form of entertainment and comfort to him I was reluctant to remove him too soon..also the screams on trying to extract him before time was also a strong deterrent for me.

If he was in a particularly vulnerable state, maybe after a big operation or if he had just had a few days of intolerable pain, the swinging would comfort him and make him smile...so I would pull the 'very sick child card'...and would shock the parents 
standing by..they would smile sheepishly and retreat to the slide or roundabout with their children in tow. Maybe it was a little selfish and incredibly mean..I realise this more now writing this eek...but..really you had to be there..or you are probably glad you were not.

God uses us all according to his Will and purpose, I know my characteristics from having Attention  Deficit Hyperactivity disorder (ADHD) were paramount on this journey as it was very suited to my ability to chop and change my plans at a moments notice. the downside to that is that I have no fear in saying things outright at the wrong time..oops. That was harder for God to control.

So many hours I recall in swings..lifting him so high towards me then counting down to 'launch'  letting him go - swinging to great heights pushing him higher and higher...he would be wrapped up in hat scarf and gloves in mid winter, and sunhat tshirt and factor 50 in summer. We would observe the world going by as he swung..making up horrendous crazy stories about people striding by...telling funny tales about bogeys and bad smells ...the park opposite the John Radcliffe was one of his favourites to chill in as it was opposite a huge building site.

We would look up to the immense cranes lifting the huge steel girders and concrete blocks for the new children's hospital..right over our heads..I was always concerned they might just come tumbling down. Willie assured me often we were safe. Building sites were on Willies top ten list and fairly close to the top. He would stand mesmerised or sit in his pushchair for hours watching silently..then ringing the builders on his imaginary phone.."der der der he would say for the dialling tone..Builderrr - that would be your prompt.."yes Willie?"
"Where are you going to put those concrete blocks?" 
"On that bald mans head"...you see Willie loved "ridiculous"...he had a good imagination and so it was easy to entertain him with crazy notions and preposterous ideas. I just loved that giggle!

One day when Willie was with his mum the 'ground controller' actually let him speak to the man in the crane several hundred foot in the air. This Willie never forgot. I have forgotten the crane drivers name but Willie never did..and I often had to replay that telephone conversation with him. That ground controller made his day and even his year by his generosity. Credit to Zoe to for being bold in her request. Willie never wanted much, he had no bucket list but was extremely contented watching the world go by...especially in the shape of cranes, bulldozers, drills, diggers and  electric generators...this boy had a huge command of the English language and remembered names of everything and everyone after the first time he was told. Incredible for a three year old.

Leading us to another love - sandpits..inside or out big or small. Toy diggers, spoons and water...the essential item for good clean yet messy fun. The hospitals were equipped with many a sandpit...and if there wasn't one in the immediate vicinity of the ward then we would have to go on an adventure of exploration to find one in another ward...we also found a rocking horse on our travels at the Radcliffe Infirmary.

No ordinary rocking horse..this one made a special 'phut' sound when rocking..so quickly got dubbed the f****ing horse. I know this is shocking..I'm confessing to the fact that yes we did call this poor horse by this unfortunate and very rude name. We even made up a rhyme to sing to it whilst Willie was on board.  I only recall baked beans being part of the chorus but little else now. He loved that horse and we would visit him often, for a fun and giggly ride.

The playrooms  at the hospitals varied but were all fully equipped with a huge variety of toys, games and paints etc. They also came complete with a trained play nurse. Becky was his favourite. She had an endearing way of persuading Willie to paint with potato prints. Willies attention span was all of 1.7 seconds...if you did not have him 'hooked' in that short space of time you would have lost him as he scuttled off to another better and more interesting activity. Becky along with the others had a natural gift for knowing exactly how to keep this bundle of energy amused for at least half an hour lol.

The new children's hospital at The John Radcliffe had the most inside/outside playroom with the mandatory sandpit. It's amazing how therapeutic that sand can be. Pouring, filling mixing..making. Even after Willie lost his sight completely, later on, he still enjoyed the different textures of sand depending on the quantity of water added. Right up to the very last few weeks this remained one of the most rewarding pastimes for Willie.

Thank God for sand! I thank God for many others things to but swings, mud, sand and building sites in particular today as I remember how important these were in Willies life. I also pay tribute to Rheanna, Zoe, relatives, au pairs, the staff at hospital and school and friends that spent many many hours indulging this wee son in his world of 'digging' and 'swinging'...

to be continued...