'Who flung poo'..

'Chillin' with 'Lamby'

The official care programme for Willie stepped up a notch as he deteriorated - many social workers visited to ensure his welfare was at its best. They sent some 'play workers' who were employed specifically to stimulate Willies mind and find simple ways to entertain him. They were all lovely, although I cannot remember all their names. Sometimes they would just stay in the bedroom with him if he was tired, or they would go for a walk with Zoe and Willie to get some fresh air. Willie always went in his special pushchair as he was to weary to walk any distance.

Being totally blind, watching DVD's were not the best option, so music became a bigger part of his life, either playing it or listening to it, compilations were made up of his favourite tracks to soothe him whilst he lay chillin' on the bed. The play workers, his teachers from school, friends, relatives Zoe and Rheanna all read countless stories to him..well when I say 'countless' it was the favourite one or two books countless times. If you read it with a zany voice you could continue  (the head teacher was rejected after 1.2 minutes by Willie screaming 'get her out of here!' and crying hysterically...she did not take my advice to add some silly bits to the story).

Katie my niece was only 8 years old, and was here in the last week he was with us. She comes from Lancashire, and he adored her accent. He would lie for hours nestling into Zoe whilst Katie relentlessly read Dr. Dog over and over again. The funny bits he would giggle at, and in between he would smile contentedly. The term 'fading away' was becoming a reality...

There was a TV series I remember when I was growing up called 'Angels' about nurses, our penultimate Angel (if I'm understanding the correct meaning of that big word) was a young girl called Amy, who has since become a nurse at Great Ormond Street Hospital, a wife and mother of two little boys..  On his occasional respite days at 'Mencap' Amy got to know Willie as she was working there at the time. Besotted with this young man and his cute/feisty ways...(he could be a little challenging at times, and would think nothing of threatening you with sticking your head in a very unusual place...like an elephants bottom as Julia reminded me the other day lol).

Not to be put off by the challenge, Amy embraced it completely, volunteering to be with Willie and Zoe to 10 or 11pm at night. A compassionate lady in her early twenties, she had a very witty sense of humour and a huge capacity to love, whilst entertaining. Willie and Rheanna loved her to bits..and so did I! She made me laugh..she was thoughtful..and made herself available at any opportunity - Amy even gave up her job she had got in Oxford towards the end, to spend more time with him. Unselfishly she would spend hours lying on the bed cuddling him, reading to him, making up stories - usually about poo. Not quite the Florence Nightingale lookalike, Amy had bright ginger hair and freckles, is quite tall and was very cuddly. Again God's provision, as she went onto lose a few stone afterwards to marry the love of her life.

 She had worked with older children and she would tell Willie some of the crazy stories...like the boy who used to fling his poo across the room. I am certain that at the time Amy did not find this amusing, but when retelling it to her little buddy in exaggerated form, it became a very funny tale. Willie loved this boy through the fond stories she shared..obviously under a false name! I also believe Amy had the 'licence to invent' that we all enjoyed at the time, so her tales became hilarious. It was good to walk in the room to find Zoe laughing along with Amy and Willie. Love makes the world go round..and Amy bought oodles of love with her every time.

One day she turned up with a 'build a bear' teddy bear, when you pressed his ear he said 'who flung poo' which would send Willie into fits of giggles. He loved cuddling the bear, but his all time favourite toy was 'Lamby', a big white cuddly sheep.

Rheanna, me and Amy went on long walks with Willie and our two dogs, strolling, laughing together..Willie joining in then dozing. If he was up to it he would have a swing, but as the days progressed, it was an effort to sit upright for too long. looking back at the videos, you can see how much of an effort Willie made to appear happy and 'ok'. Bless him. he would be bouyant and happy for a few minutes, but then you can see a glimpse of pain written in face. I cannot remember him moaning. if ever there was pain he would ask the question "When will Jesus give me my wings, I want my wings". Then we knew it was bad, and could increase the pain killers he was on.

Amy gave me respite. If I knew she was 'in situ' I could relax and go out and about, and spend some much needed time with Pete and the boys. I really did'nt mind being on call through the day and night, but it was good to re-charge my batteries to go in fresh if Amy, David, grandma or other help came along. I think Amy was a gift to me and to our family as well as a gift to those really in need. Amy remembers the day Willie left us, getting a hug from the Naomi House nurses when they came to our house. She recalls that moment was when she decided to become a children's nurse. Willie influenced many lives in his short time on earth.

You might be wondering why Willie didn't go into a hospice. The amazing provision at Naomi House at Sutton Scotney just 25 minutes away was a possibility. We visited there for a day to look around. Just like Helen House in Oxford it offered a wealth of love, expertise, care, fun, 24/7..for both the patient and their families. Lovely rooms were available for the mums and dads to get some sleep, or they could have a camp bed in with their child. This facility was outstanding and they did invite Zoe to stay with Willie for a couple of days so Willie could get accustomed to their surroundings. then when the time came closer, they could move in and know what to expect. It was a great plan, a huge generous offer as the places were precious and in demand (sadly).

Zoe and Willie took off, with Anna I believe another lovely social worker/nurse sent along to help. Amy also went along - from memory I think she took Rheanna down for a visit to. Sadly this arrangement did not transpire to be the best one.

I truly believe that one of the reasons Willie was so unsettled was because he knew our house was the 'airport to Heaven'..hadn't nanny left from this same building just months before? With Willie being fretful and upset, it made it doubly hard for Zoe. Amy and fellow carers had gotten to know the 'routine' Zoe followed. They were aware of how to hold him, feed him, talk to him .We had all had some time to work out how to console Willie, and to walk side by side with Zoe. Rheanna was easy to look after, but by now she was truly ensconced in our family and did not like the prospect of going anywhere else. Willie and Zoe had lifted from that original depression, and had acclimatised to 'Smith household phenomena'.

The well meaning nurses and carers did not stand a chance. Willie and Zoe were like 'fish out of water'. there was only one option....to return to and wait at 'the airport'. When they returned after a couple of days trial, I remember lying on the bed stroking his curls, whispering to him to calm him down. Zoe sat on a chair talking to the social worker next to the bed. My heart was fit to burst, God filled me with His overwhelming compassion, as I promised Willie that he could wait here until he got his wings. The gratitude shown in that beautiful angelic smile made that decision all the easier. I had no idea whether that would be days, weeks or months, but I knew it was the only option. I tried not to think about the consequences as they were irrelevant.

Zoe told me recently that the social worker had overheard me and was quite cross. she thought it was very wrong of me to promise something I couldn't abide by. She did not account for God's provision. If God Prompts then it is not for us to question but to trust. I trusted.

The whole time Zoe had been living with us we had not come to blows, in spite of us being on opposite sides of many 'spectrums'..me being the crazy one... I can only put that down to the Grace of God and our shared warped sense of humour. One day I was standing in my kitchen and I felt His Grace raining down on me. It was a physical sensation, it was more than sufficient for our whole household. This I knew would get us all through what was abound. We had no idea where this journey was taking us and for how long. God's hand had been prominent in all that had occurred since they moved in, I knew He would not forsake us..but go ahead to make it as' palatable' as only The Lord knew how.

Lying on the bed promising a little boy 'waiting for his wings', promising we would be there for him every step of the way, giving him reassurance that Jesus was coming soon, very soon, felt both sad and joyful at the same time. This boy of nearly 8 did not desire earthly gifts, but treasures beyond material objects. he craved the love of his mum, God (yes he made that clear often) dad, sister, grandma, grandad, many other relatives, Smiffy, the other Smiffs, Amy, Julia, Ryan..the list is endless..This cherub had an army of people who had fallen in love with the braves, cutest, wisest little man they had ever met. we could only walk beside him in awe...