A birthday letter to Heaven, from Big sister Rheanna, 18/06/2014

Happy birthday Willie.

Figured this was an appropriate day to share our moments.

 I'm sat by the beach writing this, you would love it apart from the tantrum you would have due to their being no sand :/ we used to go to the beach every year. Didn't matter where, as long as sand, spades and buckets were provided you were satisfied. You'd build sand castles as I watched, then occasionally I'd squash them for my sisterly enjoyment. You would throw a paddy and refuse to talk to me. That never held out long though soon enough we'd be back building castles and moats coming up with crazy stories of those little people who would live in our masterpiece. Your crazy imagination never failed to be present. I remember those nights when you'd be in mums bed with your favourite cuddly toys lammie and monkey, such original names aha. I'd pretend we were on a boat and playing along as always you'd wrap the duvet around us so the four of us were safe from the storm. 'I'm safe with my big sister' you'd say. Then I'd read your favourite story or muck around until you giggled. Your laugh was so special. Face screwed up with squinted eyes and those dimples :) I can't remember many moments that didn't end in a classic giggle. Whether you were in pain or angry or half asleep somehow it would come out.

When we moved to Sue's everything became quite separate. There was so much going on. The boys kept me busy whether we were fighting or coming up with silly games, but you were always there. I'd bring Rosie and poppy to you, although your preference fell on Rosie. You never liked dogs a great deal. You adored Rosie though, she'd be your personal foot rest, always gentle with you. I know Susie has a sweet picture of Rosie laying next to you keeping watch over you on the trampoline, one of your many angels. 

The suns setting now. It's beautiful. If you were here we'd be leaving, it would be that time for you to have a whine over the sand being up your shirt and blaming it on everyone else but yourself. Once washed off all would be better. it normally didn't take a lot to cheer you back up, music being one. You had a massive thing for dancing. There were the select few favourite cd's from monkey music to church songs. Whichever one, you'd fling your self around the kitchen floor endlessly. The best was with our au-pair Martina. In-between her legs sliding across the floor or doing your little jiggle singing along. The majority of the time it was more like making noises along to the music with your tongue stuck out making funny faces along with it. 

Whenever I think of you I remember how you had my back. It's normal for older sisters/brothers to always protect the younger ones, however in some ways you took care of me more than I did you. If I ever got upset you'd run in to hug me better. If I ever ran into trouble with mum or dad it often turned into a shouting/crying match. You would get upset and have a go at them for telling me off. I can never forget how angry you would get if somebody upset me. You always stood up for me. Always trying your hardest to protect me.

You had all your crazy irritating habits. Stealing my stuff and blaming it on the imaginative trolls that 'lived' in the garden hedge. Most of which never got returned. Even when I saw your playing with them you'd keep to your story of the trolls. Our garden must have been one of your favourite spots. Big trampoline, swings and a muddy patch. The 'muddy patch' was your life. It started as a small area of mud in the top corner of the garden. Then mum made it official with bricks built into the ground showing 'willies territory'. You had endless amount of diggers and various contraptions. Once you started it was impossible to get you away. The insane part was there was no aim to it all. no target, you were just crazy for digging. Such joy from such a simple thing. Time in the swing came up close second on your priorities. The favourite game for the swings being football. Get various participants to throw the ball at the perfect time for you to kick it from the swing. I felt sorry for whoever had to remove you when it was time to head back inside. It's something I often avoided as it was quite the challenge. 

I've mentioned your paddies and tantrums a fair bit as they made a frequent appearance. Sometimes they'd last hours and sometimes not long at all. Often mum or dad would shut either of us in the living room if we misbehaved. I would just sulk on the sofa until I was allowed out. You however took to a more inventful approach. The living room is where your drill and tool collection lived and various other building sets. To grasp their attention to be let out you'd start at work on the door, generally the more into it you got the anger would start to fade and you'd find it hilarious.  Often screaming in frustration you'd drill, smash, scratch, kick the door until you were released. Then you'd either storm out saying how unacceptable it was, it the drilling would have perked you up and you'd stroll out with a smile. 

I hope your up there having a crazy time for you 14th. Wherever you are, you'll be living it out. I've heard many people say when you lose someone it gets better with time...it never gets better but you learn to think of the good times and treasure them. I have so many memories little things that happened over the years, all your small habits that made you so special. Not a day goes by where I Don't think of your reaction to something or how much you'd enjoy each little thing. I always think if you here with that cheeky grin. You'll always be my brother and your always here with me somehow. Never forget how much I love you. Happy birthday Willie x

A beautiful day....

God never ceases to amaze me, here I am sitting at my computer early in the morning on the 6th Anniversary of Willie getting his wings...and 'flying to Heaven.'. You could say I feel overwhelmed by The Lord's attention to timing. For 6 years I have promised Rheanna I would tell his powerful and inspirational story.

When my friend suggested I 'blogged' it in January this year, I thought I would give that a try..maybe it would help my focus, one small bit at a time.Without a doubt I believe Jesus, through His Holy Spirit has been writing this with me. I have found regular slots to be able to enjoy sharing this journey with so many following it. You have spurred me on with your kind comments, and encouragement.

I sincerely apologise for any or should I say many..lapses in memory that mean I may have missed strategic and important people out, I promise you it was not deliberate..I am hoping that this will be edited into book form so I can hand it to people who I feel led to share this beautiful story with. hopefully Zoe will remind me of anything I've missed out.

Tomorrow I fly to the States for my Godsons' wedding...and felt, as it was getting close to the end of the blog I would like to finish it before I left. It dawned on me last Friday that if I did the last post today..it would fall on Willies anniversary. Incredible...God's timing IS overwhelmingly unbelievable. I have tried to write this over the weekend, to publish it today..but for the first time I experienced writers block...it didn't flow..I had to wait until the time was right..with Jesus..

So here I am 6 years after Willie obtained the long awaited wings...in the very same room he flew from..'the departure lounge' at 7am ...who would have thought it?


It feels the right time to finish the blog....After this, there will be one more special post on the anniversary of his earthly birthday 18th June written by a very special guest.

There is no precedent for what to do when someone is dying...It was not my first experience, as I had been with my dear friend Andy, and then my mum just a few months before. Both of those times had been a true Blessing and so I was not afraid as I trusted that Jesus would be with us all , gently leading Willie to Heaven, whispering his name and holding out His hand when the moment arrived. In 'Willie terms' - Jesus finally giving him the wings he had so long desired.

Zoe's dear dad had passed away in February earlier that year, and she had been Blessed to be with him at the time. So together we were comfortable, grateful to God for His provision. Zoe months before had feared how it would be at the end..her biggest dread would have been in a hospital bed, surrounded by relative strangers. We treasured the tranquillity and privacy this room afforded us to walk those final steps on earth with her beloved son.

After the traumatic hour the day before..(Thank God he did not depart then.) this was a vast contrast...Zoe laid down on the bed next to the sleeping cherub...stroking his arm gently..giving assurance that she was there..as she had promised all those months before when he had asked if he could hold onto her when he was dying...

I faffed a bit, in and out, wondering if Willie would choose to be just with his mum or with both of us by his side. Mostly I was lying on the other side, holding his other hand. Journeying together ..peaceful..trusting.

Zoe and I chatted as if he was still 'in the conversation'..we giggled at his antics over the years..his mild threats of sticking peoples heads in rather unusual places if he didn't like something...his bravery when they took out 30 odd stitches without him flinching..the hours on a swing..lighting candles in the church...adventures with his big sister Rheanna..about how he would be running in Heaven, over vast
green hills..shouting 'Look at this - look at that'...looking forward to an eternity of love without pain or blemish..in a perfect body...hugging nanny on arrival as she had promised she would be waiting for him..
I was encouraging him to go, but I know Zoe couldn't - she didn't want to lose him..the thought was too painful....a mothers' true nightmare about to be realised...

None of us know what Heaven is truly like, I only had a small taste seven days before when I felt the presence of angels, but the details are not  important ...it is enough to trust God that it will be good..very good..perfect. We knew without any doubt that this small boy two weeks before his 8th birthday trusted more than anyone else..he was excited..he couldn't wait to get there..

Zoe was the best a mother could be, setting aside her own indescribable grief right up until his body was cremated..being all Willie needed her to be, strength beyond human comprehension..unselfish to his last breath and beyond.

The hours ticked by, his breathing paced further apart..I found myself timing the gaps in between like
contractions...It dawned on me how we 'labour' to come into this world and 'labour' to leave it...but everyone's labour is unique to them..some instant, some slow and uncomfortable..some steady without complications..Praise God, Willie's was peaceful without complications. With each breath , even though we were talking, we held our own..anticipating...when he breathed again..we exchanged 'the look', I have no idea how to describe 'the look', but we knew and understood..it was an unspoken love language..he was still with us..

We were laughing heartily when he 'chose' his moment to leave us...there was a distinct moment when our own hearts stopped beating, we held our breath..something was different..there was silence..our mouths open..looking questionably at each other...the Peace that passes all understanding..uniting us...

Itwas in the shower the next morning, after a good nights sleep I questioned why we were laughing as he left..God spoke to me styraight away..Zoe wouldn't have made it through otherwise..also i truly believe Willie waited until the moment he knew his mum would be strong enough to let him go.

Surreal...

People often ask "Where were you, when you heard Elvis had died"...I am sure nearly all who knew Willie can remember exactly where they were and what they were doing.

To have travelled so far with this bright button and to have been anywhere else but by his side when he was granted his wings is too unbearable to think about. I am sooo grateful to The Lord for not taking him without warning...and infinitely grateful to Zoe for allowing me to share this most precious and intimate time with her and Willie...

How does a mothers love incorporate, loving her child through the process of dying. This is not normal. We labour with excited anticipation of giving birth to our children. Where does it prepare you in 'practical parenting' to help your child leave this world..after only a few short years on earth...before you? This is not how it should be. But Zoe had spent the last five years getting accustomed to 'not as it should be'....and yet nothing could prepare her for this, no precedent, no rule book, no ten step guide to the best way forward...just your mothers love, a double bed and a crazy friend that had not slept much in 3 days...

It was probably nothing like we or you would have imagined...it was truly beautiful.

Zoe was in no rush to call anyone..we stayed with him...quietly absorbing the reality of what just happened...David came round as soon as we phoned him..he had requested for us to call if anything changed..but there had been no specific change just a few more seconds in between each laboured breath..so we had not known it was imminent.....the nurses had said it could still be days.

The morning came..it was time to break the news to Rheanna and to so many others waiting...wondering..

I imagined Willie in Heaven..I felt joyful thinking of  his face beaming...he had finally arrived.

Zoe did not want Willie to be taken away in the back of an undertakers van, alone...so he stayed looking like a sleeping angel on the bed...people came all day long to say goodbye...As in life Willie had never been alone in a room, so in death Zoe could not bring herself to walk away unless someone was with him. We spent the day talking to him as if he was still with us. I cannot begin to explain how natural it all felt..God's Grace evidently pouring through our ceiling as always..

The day was quite something...no eeriness, no fear ....he looked like the sleeping angel he had become...a stream of relatives and friends..his dad and grandma were besides themselves with grief, as were many passing through. Rheanna was amazingly accepting..she to was happy for her little brother..she knew how much he had wanted to go..The Lord had prepared her well.She was sad, sad that these wonderful nine weeks of incredible adventure and fun had come to an end..it had been an amazing time all of us together under one roof...sad she would not be able to hug her brother and play with him anymore..

God's Grace was more than sufficient for Zoe, Rheanna and I. So many prayers had been sent up for
us all. The power of prayer is beyond human comprehension at times such as these. It's as if the whole generating station was lighting a few light bulbs and we were the light bulbs. Amazing. Zoe was so calm...a mothers love is so phenomenal that she put her sons heartfelt desire way above her own grief...she held onto that deep heart wrenching uncontrollable grief until she had seen Willie through to the point of cremation. Only then when her 'job' for her son was complete did she allow her grief to erupt. Strong, calm, all that her baby boy needed her to be...for as long as his body remained in her care.

The Naomi house nurses came over to talk about moving him to the 'butterfly room'. Naomi children's hospice have a facility called 'the butterfly room' - a refrigerated bedroom that keeps the body at the right temperature. It has a proper bed, chest of drawers etc and a carer assigned to the room 24/7. They treat the child as if they are still with us, reading to them, watching over them, never far away. What a provision...it allows the parents to slowly get used to leaving their child. There is a bedroom upstairs the parents stay in...and they encourage and co-erce them gently away day by day..increasing the time - preparing for the final goodbye at the funeral. Two nurses came to talk yo us..Amy remembers the hug she got from one of them, and felt such compassion that it confirmed to Amy that she really did want to become a nurse...which she is now at Great Ormond Street handing out hugs when required herself.

At the hospice they have counsellors on hand, a lovely lady comes and takes handprints and footprints to make moulds to be turned into bronze to be kept forever. And beautifully preserved blond curls for us all to keep.  They advise on funeral arrangements and even print the order of service free of charge. God's provision again...what a huge difference this made to Zoe, David and Rheanna. How tranquil... Not the usual drawer in a mortuary, with instant separation but a humane gesture of pure love and compassion. Amen to that.

Because Zoe didn't want Willie to go alone in the back of a van...we had no other option than to take
him to Naomi house ourselves...in the car. I called the only person I could think of that would be crazy enough to help..Annie Poppins..

It was a legal requirement to notify the police that we would be transporting a dead body through their county...so that was Berkshire and Hampshire.

Zoe had gone home to pack some bits for her stay at the hospice, with me promising I would ensure
Willie was not left alone for a minute. I felt a bit strange about lying next to him so I curled up on the armchair at the end of the bed and tried to get some much needed sleep. The doorbell rang.

I saw the policemen standing outside through the window, so I jumped up to let them in. Two young officers wanted to ask some questions. I said of course, would they like a cup of tea and some flapjack (Decima's famous flapjack of course!) - yes please they answered. Ouch , now I had a dilemma...to go to the kitchen to make them tea would mean leaving Willie alone. I had spent 5 years
building up the trust in Zoe, I could not risk losing it at the last post.

I tried as best I could in a rambled delirious way as you do when sleep depraved for a few days...they agreed to stay with Willie whilst I got the tea. I introduced them to him, made a joke 'with Willie' about only he could get the police to come and say goodbye..yes I was very tired...I think they were looking for the 'candid camera' on the wall.

Apparently we discovered later, one of them had nipped outside to call Naomi house and ask if they were certain he had died..as he looked like he was asleep and I (crazy lady) was still talking to him. The reason it transpired they called round was because his death was not certified on the central computer..When the doctor came to certify his death...for some reason they had overlooked putting it on the computer on their return to the surgery....so they called Dr Barrie out from home to bring the doctors certificate required, which she did Bless her.

The police eventually left mildly happy that all was in order (they may still be in therapy). We finally had permission to move Willie to his new bedroom.

The days that followed were truly Blessed..his celebration of life was incredible testimony to a life well lived...a life full of fun and laughter inspite of the pain..guest speakers including a teacher giving us a top class impression of him...giving us a joyful send off..we changed the words to one of his favourite songs..seasons in the sun..which he would have found very funny..the resident baptist minister who let Glendale Church take over his church building for the day..was far less amused when he saw the order of service..he had cross words with me before it began...he had never met Willie..After the awesome service full of overwhelming love and hope - so many stories retold..he understood why the word 'poo' had to be sung...he apologised..

His main concern was the fact that there would be newspaper reporters present as word had got out that Willie was coming in a very different mode of transport than a hearse.' Ryan the builder' had kept his promise that Willie would have a ride in his van..only he wasn't sitting up front..but in the back - in a beautiful willow basket..amidst his favourite tools. God's provision as always the very best...more than we can ever imagine.

Rheanna, grandma..spoke eloquently and even Zoe went to the front to pay tribute to this very special young man..as you can imagine..it was not easy, and our dear friend Annie Poppins stepped in to finish what this amazing mum had started...at the end of the service, after the video of him waving goodbye from the kawasaki 500 to the final record..'Ground control to Major Tom'...there was silence..nobody moved..hundreds of people packed in to the church....but nobody wanted to move..it had been perfect..a true testimony to a short life well lived ..so much so that Zoe turned to me and said "can we do that all over again.."

'Amazing Grace...How sweet the sound.'...

If you recall I often wondered why a God had placed a young boy with a serious 'terminal illness' in a family that had a single disabled mum, a hard working (often abroad) dad and a bubbly vivacious older sister. People have likened our lives to a Tapestry - where here on earth we only get to see the underside - knots and all. When we get to Heaven then Jesus shows us the upper side of the tapestry it shows how your life was indeed a complete and wonderous picture.

How humbled were we when God chose to share that 'upper side' with us on the day Willie died...one of the social workers had delivered a letter in the morning as soon as she heard the news. Unbeknown to us she had been bereaved a few years before and in her letter she wrote...something like this...

...you thought I was there to care for Willie, when in fact he was there to care for me...because Willie was blind I started to see the world again - as I described it to him, I learnt to stop and listen to the world instead of letting it pass me by.....because I had to answer his 'imaginary phone' I learnt to use my imagination and have fun again....

It became very clear, if Willie had been with the average 2.4 family, with two very capable and independent parents...Willie would have not touched anywhere near the amount of people he was destined to meet...and he did make a difference to the lives of the many hundred that he met.. in all sorts of ways..this young man made more of an impact in his seven years, 11 and a half months...than most people do in their 3 score years and ten....

Amen to that...he changed my life profoundly...I know he may have changed yours to - if you  had the privilege to have met him, if only for a brief few minutes...maybe he just has.. if you have been encouraged by reading his story.



Thank you Lord Jesus for writing this epic journey with me, may you be with those reading it, forgive me for any errors through a failing memory, but hopefully I have shared what you wanted me to share..thank you Lord for Willie. Amen.


And finally...


Dearest Willie,

I will never know why God chose me to be your best buddy, but I am so grateful that he did. I am relieved to have finally given the world who never met you..the essence of who you were and what you taught us..your story can now be shared as it should be - not to be forgotten - but to continue to inspire people for many years to come...I promised Rheanna I would write this one day...it only took me 6 years to get round to it..I do hope it has Blessed all those who have read it..as it has Blessed me writing it, and remembering what an incredible time we shared. Five years..all but 2 days...Awesome Willie, Awesome..

I love you and miss you so much little buddy..

'Happy Heavenly birthday'

Keep having fun my angel,

Love always..Miffy xxx...

Did I mention God?

The following morning I walked downstairs with trepidation...to find Willie and Zoe sleeping soundly. I pondered on what happened in the night and sensed a deep peace. Knowing what Willie was looking forward to, I prayed he wouldn't have to wait too long. I knew in my heart and soul that what I had experienced was only a tiny fraction of what was in store for this gentle warrior.

It was early in the morning at half term so the house was quiet. Shortly it would be bustling...God's provision is beyond human expectation. Over the years since becoming a Christian I often declare "I don't believe it!" ...watching God's plans for us unfold can be breathtaking...'wow factor'. When I declare 'I don't believe it' it is because it is truly unbelielavable. I have written a whole book in my head over the years, not just about our answered prayers but those of friends and family around us. The book was to be called (if it ever got transferred from my brain to paper - I feel another blog coming on..Julia - no groaning!) 'I don't believe it - co-incidence or God?'

The idea would be to retell these 'Awesome' stories and let non Christians read it and make their minds up - co-incidence or God-incidence?

Writing Willies journey I wonder how palatable God is to those without faith. As I'm recalling God's hand on this cherub's life I am acutely aware that many that walked with him did not share our deep faith, including many in his own family. I'm praying that as you have read the posts that you will understand that without God in his life, things may have been very different. However I truly think God is in all our lives...and if we opened our hearts to that possibility then we may start seeing His mighty hand upon us. I hope and pray that what you think is a co-incidence you start to recognise as  'God-incidence.'

Did I mention 'Him upstairs' again? That short sermon..(yes sometimes I can't help myself...always wanted to be a vicar) was inspired by my thoughts of that last week. It's not been easy to recall the exact timing of events due to my diminishing brain cells. I will try to convey the essence of those last 7 days as best as my memory lets me and with the sensitivity it deserves.

A few weeks before we had agreed to look after my niece Katie and nephew Matthew - 7 and 12 years old for my brother and sister in law to enjoy their first child free holiday in many years. My older sister was coming to stay with 2 out of her 6 children for Half term. Hannah was only 5 and Matt was 10, (her others much older and independent.)

So humanly speaking this could have been a disaster waiting to happen. 5 extra people to add into the mix of us six along with, Zoe Rheanna and Willie. 14 plus a menagerie of visitors including daily visits from Willies' dad, grandparents, aunties and uncles,social workers, doctors, nurses, care workers, teaching assistants, friends, and of course our resident angel, Amy.

I thank God that years before Jesus had led us to this house, a bargain bucket house on the main road.. which resembles the Tardis. I'm not sure that even I would have thought that having that much 'traffic' through half term would be the most innovative solution under the sad circumstances. As always God knew best.In Jeremiah 29 verse 11.'.for I know the plans I have for you 'declares The Lord, plans to prosper you and not to harm you..

This is how it panned out....

My amazing sister took on the role of 'head housekeeper' freeing me up to be available on demand in Willie's room. My firm belief  in - if you 'dilute' children they are better behaved....was a trump card...half term activities taken care of as Rheanna, Hannah and Katie played girlie stuff, whilst the several younger boys (all 5) ganged up for boys favourite pastimes...that only boys understand. I did catch them making videos with puppets and toilet rolls....like I said boys stuff!

So all children were entertained 'In House' with the occasional park run, or feeding of the ducks. But the most beautiful and poignant element to 'the old woman who lived in a shoe' scenerio was the natural desire of all these youngsters to visit Willie.

Hannah aged 5 took in her Barbie dolls to show him, letting him feel them and gently playing with them. Hannah has a beautiful heart and soon after her arrival was often found sitting close to him, keeping him company. The day he got his wings, and Hannah heard the news she rushed back into the room to be with him, taking her Barbies with her to keep him company whilst things were sorted out. At five years old you may think we should have protected her from this, but children can be far less afraid and far more accepting of death than we are as grown ups. Hannah had quickly formed a desire to 'help' as soon as she arrived. All my relatives live far away so although they had met Willie over the years, they were initially not that close. The evidence of God's love through these youngsters was incredible.

Katie at 7 years was often found by his bedside. Her cute northern accent endeared her to Willie, as she read Dr Dog, his favourite book over and again. By now Willie was off the 'swamp juice' and onto tube feeding by the stomach. He was getting incredibly weak and slept for many hours on and off. However in true Willie fashion - his smile and his infectious giggles remained until the weekend. We have a lovely video of him resting on the bed, leaning on Zoe's lap, serenely listening to Katie reading his favourite story,' Crispin the pig' had taken second place to Dr Dog by this time..more relevant. His smiles said it all, with the occasional giggle.

I still believe that some of those smiles were for our benefit, to ease us towards the finish post. This young boy had the wisdom of 'Solomon' I'm sure. He still did not call out in pain, he never complained or appeared frustrated. He trusted in that last week, i believe, that his wings would be on their way. I never did ask him if he had felt 'the angels' on that Monday night, but he probably did, and was content to wait and try to keep us moderately happy at the same time.

Rheanna, the two Matthews, Andrew and Josh came and went....Simon and Tom occasionally popping in..Simon strumming the guitar and singing his 'wee and pooh' song he had written for his music GCSE - as I said 'boys'! Willie had been so excited when Simon returned as he adored him, and loved listening to any guitar music Simon had on offer. Simon was excellent at 'homing' in to Willies sense of humour and played to it frequently. Simon currently works with young people in assisted housing.Ii think he owes his training for that position to this young man.

So you see, God provided a replacement chef and chief childminder in the form of my lovely sister Debbie. I think she would have refused to come if she had known before, what was in store..as the thought of it would have been too daunting, but as always with Gods amazing Grace and provision..she rose to the challenge perfectly. Thank you Debs.

Willie was provided with 'in house' entertainment with a variety of voices and personalities, but all of them with a heart and a deep understanding of his needs. Thank you to all of you, now grown up and possibly cannot remember much about that week.

Willie also had a flow of his own visitors which he enjoyed, getting lots of hugs and kisses...from dad and Grandma....and many others.

But the biggest 'I don't believe it' has to be how The Lord protects my husband Pete. Pete is an incredibly patient and loving man. He coped admirably with our visitors after he had gotten over the shock of me moving them in - whilst he was in Prague on a hockey tour. He never once complained or appeared grumpy, in spite of having infinite visitors coming and going. His best line of defence was sitting quietly in the lounge...and it seemed everyone respected 'his space', and it worked.

So as God's timing is always perfect (even if we can't always see that from a human perspective) Pete left on the Friday night for his annual hockey tournament in Bath. Perfect. This freed me up completely to stay with Willie and Zoe literally 24/7. By the weekend Willie's breathing was becoming more laboured, he had stopped talking, and was only able to smile on the odd occasion. The most comfortable position was for him to sit upright to help him breathe, so we sat together on the armchair, sleeping on and off through the weekend. I had respite to shower and go to the toilet, eat and have the odd cup of tea. But mostly I had the enviable job of cuddling this awesome angel for nearly every hour whilst his 'wings' were being prepared.

So many people came and went, I had to stretch my head away as they wanted to bend down and kiss those perfect cheeks. I felt so sad for Zoe that she could not hold him on her lap, but she sat on the end of the bed stroking his legs and feet, letting him know 'mummy' was there. I confess we did have moments of outrageous giggles, as the visitors leant between me and Willie, as it got quite intimate at times..sadly for them I was in the way..but did not want to keep disturbing this little one as he was seemingly comfortable.

 God enables me to deal with situations with humour. I caught Zoe's eye on a couple of occasions and it started me giggling..you know the moment of 'This is so serious whatever you do don't laugh moment'..so all you can do evidently IS laugh. I do this silently but with vast movements of uncontrollable shaking..poor Willie he was then jumping up and down on my lap and the poor visitor wondering what was going on. For all those who remotely think I'm a nice person..the truth is now out! Actually as Willie loved laughing so much - it may have been therapeutic for him...perhaps?

Apparently as the body 'shuts down'..the hearing and smell..are the last to go, so Zoe had laid down strict rules not to bring any food 'smells' in or to mention food or drink..to be fair to Willie. I cannot remember who broke the rule on the Sunday morning but someone came in cheerfully asking "who would like a cup of tea". Our mouths dropped open when this little finger rose slowly into the air...his famous 'a cup of tea - right up to there - with a big blob of honey" rang silently in the room. Tears rolled down our cheeks, evidence he was still with us, he could still hear and understand every word.

This was precious, knowing he could hear our words of assurance and love, but heartbreaking that he could not communicate or have a cup of tea :( We tried to set up a code of squeezing hands for yes and no, but Willie seemed content in his silent world. He knew he was in the 'departure lounge' and he wouldn't be waiting too much longer.

On the Saturday night David came round to spend time with his family. The most precious moments captured on film were David, Zoe and Rheanna sitting on the couch with Willie lying across them all. Cuddled together, united in love and grief...watching 'Britains Got Talent'...we thought Willie would enjoy any singing, which he seemed to, Bless him. It was a very important few hours for Willie and Rheanna, their family as one, waiting together, bonded in pure love. Awesome.

David went home and I took over the cuddling....Sunday was a day like no other...

It was evident by Willie's laboured breathing that his time was getting closer. We notified all the family who gathered around to say their goodbyes. Amy was there to.. helping change nappies and giving her support. I have no idea what was going on in the rest of the house. Incredibly life continued fairly normally, and we remained undisturbed by everyday activities and numerous children. It was quiet in the room. All you could hear was Willies deep slow breaths, I found myself counting the gaps in between as if I was counting minutes between contractions. It dawned on me how we 'labour' into this world...and many 'labour' into the next...

I had telephoned church to ask for prayer, that Jesus would come quickly and take Willie gently by the hand. After church Micah the young man who helped with the furniture removals popped by to pray for Willie, and so did Jason 'hero Kawasaki man'. It was touching and moving watching them pray with such emotion.

 There was a surreal peace within Willie, but as the morning went on he became more agitated...then without warning a small trickle of blood came from his mouth. Panic was an understatement and what followed in the next hour was possibly the worst moments of the whole journey. Indescribable agony for Zoe, who wanted to hold her son. We placed him gently on her lap, her overcoming her own physical pain in a desperation to hold her baby boy. Everyone crowded round, David, grandma, grandpa, uncles, Amy, me, Rheanna..waiting expectantly...on the films when this happened it was a sign of the end...but an hour later we realised this wasn't so in Willies case.

Zoe just wanted everyone to leave her with her son...and I do not think there is a mother on this earth that wouldn't relate to that. A time when you can be there for him in the peace and quiet, waiting 'as one'.

Not knowing what to do with Rheanna as it was getting so intense, but not wanting to exclude her either, we ended up hiding behind the curtain eating chocolate...I know...but what is appropriate behaviourat such times...there is no precedent...with an 11 year old..(we had prayed first!)

Slowly all calmed down...the visitors went out into the garden leaving Zoe in peace. Understandably she was shaken to the core. Gradually she calmed down, and felt better when the nurses arrived that we had called when it happened. Everyone including his doctor - was 'prepped' and we were all aware of the inevitable outcome, so there was no place for '999', the last thing we wanted was for Willie to be whisked away covered in life support machines, when he himself had declared openly he wanted to leave this body on earth and 'fly' to Heaven.

The nurses were reassuring and administered pain killers to Willie through his tube to make him more comfortable. They said it could still be days. After a few hours the emotionally charged relatives and friends headed home, to get some rest. They had all had time individually with Willie to say their heartfelt goodbyes...just in case he left before they returned the next day. David wept as he kissed his small frail son goodbye.

Rheanna gave her brother a gentle hug and a kiss, telling him how much she loved him and went to bed. I sat with her a while, we prayed together and then she fell asleep quickly, exhausted from the events of the day, but now peaceful,  Thank God.

Pete had returned from Bath and pretty much went straight to bed, relieved he had missed the drama and emotional roller coaster of the long day. Not because he is heartless but uncomfortable as most people would be in such sad circumstances...what words are there for family and friends? What do you talk about, what can you do? I find it remarkable that The Lord knows Pete so very well. He moved him out for the weekend so we could move them in, and it seems that God ensures Pete's away when the poignant time arrives..he also did this for Pete when my mum left us..then it was an annual exhibition for work that he had gone away to! God must know there are some things Pete is better off not being there for so I can give my all and not worry about him to.

All the remaining people had retired for the night. My sister had done a sterling job keeping the visitors topped up with tea and sandwiches. Bless her she was exhausted from a long week, but continued to play the part so well that  God had appointed her to. He had equipped her well with energy, foresight and compassion.

That left me, Zoe and Willie...the three musketeers...Zoe wanting to remain close to Willie had asked the nurses to make him comfortable on the bed - so they propped him up on a couple of pillows, to help with his breathing - now a long and minute and a half in between each one. This was the third night without sleep...our adrenalin keeping us going...prayers going up for us all, God with us, Jesus with us, The Holy Spirit hovering over us and within us...Zoe lying beside her son...and i lying on the other side...we
Knew in our hearts his wings would be arriving soon..very soon..Praise God x

Waiting with God..

I asked Rheanna recently if she remembered moving in with us, and the reason why. She said she knew it was because Willie was dying, but she never thought he would. I guess most of us felt the same way. He kept going, kept smiling, kept strumming on his guitar...against all odds he was still with us - a few years longer than I'm sure the doctors predicted, after they discovered the biggest craniopharyngioma known to 'medical history.'...

The last bank holiday in May 2008, Amy was 'in situ' so I escaped for the day with my family. I have no recollection of what we did, but I recall sneaking into 'the room' (we never did officially name it)..for a bedtime cuddle. Amy had not long left.. about 10pm... Zoe said they had enjoyed their day, but Willie hadn't been too well.

I scooped him up in my arms and cradled him like a small baby. Immediately I sensed things had changed. Willies body felt stiffer than before. An unusual stiffness like he may snap in two if you held him in the wrong way. It was the first realisation that Willie might actually leave us. Rheanna was right...did any of us think he would be granted his wings? It hit home hard, my heart sank as I tried to hold him gently, never wanting to let him go.

Lying him carefully back on the bed, I gave Zoe an extra big hug. We exchanged 'knowing' glances and I walked reluctantly out of the door to go to bed. Zoe was being so incredibly brave, she never faltered for a minute, keeping strong every step of the way. A mothers love..solid and dependable..Zoe still ensuring her son and daughter enjoyed life as much as they could do in the circumstances..never giving up , not for one moment. The expression on her face was tranquil,peaceful, accepting that this was the next step, it was inevitable..and she would give her whole being to see it through as best she possibly could. She was not thinking about herself and what she felt, but this was still Willies time. It was about him and Rheanna..a mother's selfless love.


 I checked on all my sleeping boys in their various rooms (what age do you actually stop doing that?), and finally I peeked in to see Rheanna..she was sleeping fast..in her usual position - upside down, quilt in a heap and pillow fallen on the floor. I had a lump in my throat and tears rolling down my cheeks. My heart torn in two imagining how this vivacious and bubbly girl was going to cope with losing her baby brother. Rheanna was steadfast in her love for Willie, she adored him for who he was, at his celebration of life she bravely stood at the front and talked about how she was glad Willie had a tumour, because that tumour made him who he was, and she wouldn't have had him any different. Brave and wise.

 Like all siblings patience wore thin at times, but after all they had been through their love for each other was deep. Willie idolised 'Rara' his big sister, he was sad when she wasn't around, and got excited when she came in the room.He loved her to read books to him. Sometimes he would revert back to the 'old Willie' and tell her to go away..but that definitely happened less.


Their relationship developed with a new maturity in those last few weeks. Rheanna happy to take second place, merged into the background giving her mum freedom to be there for her little brother on his final journey. At eleven years old, I'm not sure how much Rheanna took on board what it would be like to lose someone you loved . As a child we cope in different ways to adults. Immersing herself in the 'Smith' chaos helped her to live a busy existence where there was little room for fear and anticipation.

School life had continued...homework completed..Rheanna was a bright and intelligent child and is currently sitting her AS levels with predicted high grades. She loved reading books, and would often take one to bed to read before sleeping. Rheanna was made of strong stuff, maybe building up a resilience to feeling sad over the years living with her ill brother and her disabled mum. She was very brave and would pray with me for Willie to either be healed or for Jesus to grant him 'his wings', we
both trusted in Jesus to make the right decision for Willie.

I remember one night in particular she got very tearful and asked me what I thought Heaven was like. We hugged, prayed together and she relaxed and went to sleep peacefully. There may have been other nights she cried herself to sleep, but mostly she appeared settled and relatively happy. Once she was upset because she knew after Willie had gone to Heaven they would be moving back home. I guess none of us could blame her. How sad to be moving back without your brother, moving away from a busy , lively household to a very quiet one. Bless her.

As Willie got weaker you would often find her snuggled in bed with him, lying quietly, stroking his curls, whispering in his ear....Zoe often curled up to - the three of them as one. Sometimes David would try and squeeze on the bed to, a family 'waiting'...together.

That night I closed Rheanna's door quietly and got ready for bed. My heart sinking, feeling desolate
and helpless. I climbed into bed next to Pete who was already sleeping...thankfully as I didn't feel like talking, I was too choked up.

I lay there gone midnight pondering, praying. Like a wave of emotion I felt our bedroom fill with a strong sense of 'angels' - please do not ask me why I thought they were angels, but it felt as if the room
was filling up with them, more and more. I remember thinking - they are coming for Willie..should I
go downstairs to be with Zoe? I didn't feel led to go. Maybe God thought it would be easier if Zoe was sleeping when He took Willie by the hand...so if I went down I would wake her..I lie very still as the sense of overwhelming joy swept over me. The feeling got very intense - euphoric...there was no earthly word that described the incredible emotion, but it was beautiful beyond belief. As the room filled More and more I started to believe they were coming for me, not Willie after all.

I looked at Pete sleeping soundly by my side, I pictured our four sons sleeping in their beds, Andrew
only 9 at the time, and yet this indescribable feeling was out of this world, and I felt I would have gone willingly...and trusted Jesus to take care of my family. Slowly the emotion and power in the room subsided gently...I was still here, but I was unsure about Willie, I really didn't feel I should go and investigate....I just felt immensely peaceful, as though God had given me a tiny taste of Heaven. By His incredible Grace I do believe it was a gift - this was just a snippet of what was in store for Willie, how could I be sad? I had a huge contented smile on my face as I fell asleep without fear. Thank you Jesus for that amazing insight...if that's what Willie had experienced over the past few weeks, no wonder he prayed with such wisdom. It felt by all accounts 'a taste of heavenly realms'..

I have pondered whether or not to share this experience with you. I have no idea where this sits biblically, I can only retell it as it was...I do hope you you accept it for the reassurance God wanted to give me to trust in Him even more - to be happy for Willie when he got his wings. It transformed my mind, the inevitable was drawing near, even though I would miss my best buddy, what a gift to have an 'sense' of the overpowering love waiting for him in Heaven.

I am in awe at the way God prepares us, He is a loving and caring Father in Heaven. The Lord had been equipping me every step of the way, and this truly strengthened me to be able to support the family as we all headed to the inevitable - It transpired that this experience happened exactly 7 days (almost to the hour) - before Willie was granted his long awaited wings. Thank you God for giving us what we need, when we need it. Amen x

Faith of a 7 year old..

Willies journey of faith has been on my heart and in my mind since Willie moved on. I have told many people over the years about his incredible faith, and I'm sure there are very few weeks that go by, that I don't mention him and his desire to fly to Heaven. I always try to précis it down so as not to keep them for a few hours..but always feel I'm selling Willie short if I rush it. I have often wished I had a book in my hand that I can give them. A book full of inspiration, young profound wisdom showing the love of God - that will touch the very heart of their souls. A book they can take away and savour the moment, digest the deep desire this brave soul had to obtain his 'wings'...a thirst only to be quenched by Jesus himself reaching down gently to take this little boy home to Heaven.

I wouldn't have to speak a word, but just hand them the book and say 'read this'. A powerful testimony to God's infinite love, Willies story had to be told. How could such a short life be extinguished long before the three score years and ten unless there was a purpose? What a waste if his story is not shared - if he was forgotten by the majority as the years pass - just a fleeting memory as we get older, the odd smile when a reminder popped up in the shape of digger, or a busker in town. Writing this blog has been an avenue for me to tell the story...to those who knew him and to introduce him to those who didn't. As I reach the final furlong..it is with trepidation, as it's not going to be easy for any of us, least of all Zoe, David and Rheanna. I'm praying God will be writing this with me, and that I can write sensitively for the family and friends that remember this time like it was yesterday.

Willie never asked God to heal him, it was as if he accepted that was not an option for him.
To help pass the time away I suggested to Willie that we could write a letter to my son Simon who was away at that time. I asked him to dictate it whilst I wrote it. I reminded him Simon was staying where they prayed a lot, and asked Willie what prayer requests should we send?

Immediately without hesitation he answered 'ask him to pray that I can be a special star in the sky'.

 I had such a lump in my throat...Willie never talked about the level of pain he was in or complained
at being able to see the world he lived in, never. We had no idea - he put on a brave face daily,
happiest when surrounded by laughter, laughing with us. It was as if he had become the wise grown
up, easing us into letting him go. Remarkable as he still couldn't read or write...such maturity in such a young life.

The beautiful images he fed us leading to him passing were beautiful in every aspect. A special star in the sky was a profound image of such beauty. A place not here, but one that overlooked us from afar, one that remained in our sights twinkling it's radiance from the Heavens. Wow.

Three weeks before he was granted 'his wings' he took a downward turn, sleeping constantly almost to a comatose state. Not speaking one word. We really felt this was his time coming to an end, we believed we would never hear him talk again. No tears from him and only morsels of food and sips of drink. No smiling broadly whilst requesting 'a mug of tea right up to there(finger pointing
enthusiastically) with a big blob of honey. We all felt our hearts breaking as we prepared to say goodbye. He was fading it seemed by the hour, how much longer?

After a few days of this, I ventured trepidly into their room on the Saturday morning, with baited breath. I crept towards the sleeping figure, so still, so angelic. His mum propped up on one arm smiling bravely as she watched over her precious cherub. She looked up at me with that resigned heartfelt knowing smile, only a mother can give in such poignant moments. Her heart torn into pieces over the years...breaking further still.

Our eyes met then looked down at her sleeping son. Out of nowhere Willie sat bolt upright..no word of a lie, chatting happily as if nothing was wrong.

"Can I play in the sand today?" he asked with an impish grin on his face.

Zoe and I looked at each other in shocked surprise...we seriously had not expected to hear his sweet voice ever again. Zoe answered him quickly 'Yes of course Willie - would you like a drink?"

"Yes please..a cup of tea..right up to there with a big blob of honey"

It was a good job Willie couldn't see the tears of joy and relief on our faces as we moved quickly to get tea and sand into place. Incredible recovery.

We sat Willie on the chair and Zoe knelt beside him.

"Willie, if there is anything you want to ask anything you don't understand ? - we will try and answer it for you.."

Willies face broke into a smile, a big cheesy grin..."I just want to say a great big prayer to God"


Zoe burst into tears..

"What would you like to pray for" I asked him.

" I just want to tell Him, just how much I love Him" he replied with the biggest smile reaching from ear to ear.

Willie, I knew at that moment, had taught me how to pray properly. No requests, but simply telling God how much you love Him.

If you have children of your own, have you ever had that heart stopping moment when they have come up to you, declared their love for you, and then walked off without adding.."Can I have..."


In a house full of boys, it has happened only a handful of times when they have said "I love you" with no added requests....but each rare moment it truly blessed me and made me realise that maybe God also wants us to say it to him often, just that. So when this child of 7 said it with all his heart when he had so much he could have asked for, it showed me that keeping it simple was indeed the very best prayer of all. It showed a trust that was deep and steadfast. God knew what he wanted he didn't need to ask.

There was no list that one could have anticipated..."please let me see again, don't let me die, take away my pain, heal me of my brain tumour", none of those - just - simply -" I want to tell Him how much I love Him."

For any one who has read the book 'The Shack' I believe that those few days of Willie seemingly in
an almost vegetative state, Willie had been in his own 'shack'.For those who knew Willie, you will remember how he was quite fussy who he spent time with. Not one to go off easily with a stranger, or with anyone who didn't make him laugh or play a musical instrument. So for this reason I can only conclude that Willie was in a world getting to know God, Jesus and The Holy Spirit, a world where they became what he needed them to be. An insight deeper into Heaven, building up a relationship for Willie to trust and to look forward to being with God for an eternity.

Willie knew he would be leaving his mum behind, he knew he was off on this adventure with no other human by his side. Why else would he have come back into a fully 'compos mentis' state, with such love and deep desire for God - God must have made him laugh lots and shown him eternity and the promise of a time to come without any pain or tears, but pure love and joy..forever. A promise Willie held dear, as he waited patiently for his wings.

His faith continued to grow. One day sitting in the chair he gave a loud sigh. "Whats up Willie" I
asked.

"I want the King to come today"..he sighed again.

"Which King Willie?" I asked

"The King of Bethlehem" he replied.

I looked at Zoe, astounded..nobody refers to Jesus as The King of Bethlehem, but of course He is The King born in Bethlehem".

I turned to Willie, and for his mums benefit (who was still unsure of the God stuff), I asked him if Jesus came to speak to him..he turned towards me, looking bemused and said simply "yeah?" He knew that Jesus also spoke to me, and wondered why I would even dream of asking him.


I wanted Zoe to hear all these things from his lips, words to confirm his faith, hopefully building a secure picture for her, preparing her to be able to let him go. Evidence that could not be denied. I am in awe of Jesus as He gave Willie a name we are not familiar with so that it was more than obvious The Lord was indeed speaking directly to Willie.

I reflected as I was preparing my talk for his celebration, that Willie truly understood the depth of my faith. He knew that 'our house was built on rock' as in Matthew 7 verses 24-27 - which is why I
believe he settled in so quickly and wanted to be with us when 'the storm' came.

 But dearest Willie, it never reached storm heights did it?, when you were Blessed with those wings it was but a gentle lapping of the waters on a tranquil beach. You had so much to teach us , and you taught us well. May your faith continue to Bless this world that you left. May you continue to inspire all who read about your journey. What a privilege it was to walk side by side with you. I continue to remember those precious lessons you shared with me in those last few weeks. Thank you my angel, thank you for all that you were, and all that you continue to be in our hearts. God Bless you always, Amen x

'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...

The bucket list continues...

God's provision regarding people on the journey was phenomenal - every step of the way people came and went for their allotted time. Pre-destined I'm sure by The Man from above. The many amazing au pairs, teaching assistants, nurses, doctors, friends and relatives...came, Blessed the family, was 'tangoed' by the little 'munchkin' with the cherub  features...and moved on. Some stayed for the duration, usually local people, some found it too emotional and watched from a distance.

One of Zoe's 'rocks' was a neighbour a couple of streets away called Kerry. Kerry is a well known top class child minder, with an organised home full of toys, baby chicks hatched from  eggs in a home incubator, and many children varying in age from 0-11years.  The children she looks  after adore her, and so did Willie and Rheanna.

Zoe would often stroll round with him to join in the enviable fun going on. It gave Zoe refuge if Willie was feeling a bit crotchety, and the au pairs were enjoying a couple of hours off. I bumped into the humble Kerry this week at a children's music group 'little quavers'. It was obvious she had no idea just how valuable her love and care was to the family during those emotional years. I remember her being a life saver on more than one occasion. Her husband often helped with odd jobs around the house for Zoe and her daughter Suzanne became an extra pair of hands on many occasions. Suzanne was crazy enough for Willie, yet responsible enough for Zoe's approval. Fun loving, caring and patient - one of God's angels called to duty. Suzanne is now married and a successful teacher.

During those last few weeks, our house became busier and busier with various visitors. One evening Joe, one of my sons life long friends popped by at 11pm. I opened the front door and followed him through the hallway. There was a guitar balanced precariously on the pile of 'objets d'art' accumulated at the bottom of the stairs. Joe stopped in his tracks and asked who it belonged to. 'It's Simons' ... Joe asked if he could play it...'yes of course you can, but please can you go in there I asked pointing to Zoe's door.

Joe looked perplexed...he was oblivious to what lie behind the closed door and gave me a quizzical look.

'Oh um they would enjoy a visit from a busker..'

Joe trepidly opened the door. I was behind him so I didn't catch the look on his face when he first saw a double bed in the room complete with a mummy lying next to her cute son propped up on a pillow.

'Willie this is Joe- one of Tom's friends and he can play guitar.. - do you have any requests?'

So at 11 o' clock at night  whilst Willie was in a waking mood, God produced from nowhere it seemed...our own private busker. Joe plays guitar professionally...so no amateur busker, just the best! Awesome...I'm not sure how comfortable Joe was when he realised he was playing to a blind little boy on his way to Heaven, but  the rewarding smile and enthusiastic singing along soon had Joe hooked.

Joe wasn't the only guitar playing hero on God's top ten mobile musicians...nope He also imported two New Zealanders fit for purpose. Jason and Jodie had been coming to Glendale Church for a few months when I stood at the front to share about how Willie was and what prayer requests we had for the family, and to give thanks for God's amazing ongoing provision.

Jason approached me afterwards. I was guilty of not recognising him and made that awkward
embarrassing momentous error of holding out my hand - introducing myself and asking the risque question..was he visiting Glendale for the first time. Anyone going to church regularly may be able to relate to this 'please ground swallow me up' moment when he replied "no we've been regulars for nearly a year." Ouch! How did I not notice them before? Most embarrassing. Anyway he forgave my
ignorance and asked if he could come over and visit Willie with his guitar.


Jodie and Jason visited soon afterwards, guitar in hand. They were both gifted musicians and Jodie sang beautifully to Willie when he was sleepy and he fell into a dreamy sleep. Jodie was gentle and softly spoken.

On another visit Jason who was a gentle giant, with a great imagination and wicked sense of humour ( Made to order), sat on the bed, jamming with Willie and making up songs together. It was such a beautiful entwining of two guitarists making music together.

 Jason was very gifted, not only in 'in house' entertainment, but he worked tirelessly afterwards for Willie's celebration of life, collating photos and videos -hundreds of them to use in the service.

I'm in awe of how God brought this awesome humble couple all the way from New Zealand to be such a Blessing to this brave little boy, and to Zoe and Rheanna.

Willie was enthralled and captivated by Jason and Jodie's talents. He was even more excited as Jason also mentioned he had a motorbike. Jason arrived a couple of days later...on a Kawasaki 1500 - for those not familiar with bikes..this one was big..very big...and very noisy.  Willie virtually ran towards the motorbike when we opened the door and told him Jason had arrived. He put his small hands out to caress the mean machine. Clambering aboard his grin couldn't have been any bigger.

When. Jason helped him turn the key and the engine roared into life, I stepped backwards as the noise was immense. I was waiting for the neighbours to run around to see what was going on. Zoe grimaced, Willie laughed and laughed whilst twisting the handlebar making it roar louder than an aeroplane flying low overhead.

 Zoe worried it may be a bit too noisy for Willie, Willie worried that  Jason would take him off of  it to soon.
As the mean machine throbbed  beneath him, you could see he was imagining riding through the streets, beaming smiles evidence of a dream achieved. No space for a headache from his tumour in those awesome moments, just sheer pleasure beyond his wildest dreams. Jason was amazing, letting him rev the throttle time and again. What joy he bought to that little boy that day. God knew, we didn't . I would never had thought that would have been on Willie's bucket list.


Jason realised how much Willie loved being on the bike and suggested Zoe should take him to Jason's
and Jodie's house so he could have a ride down the private lane. A couple of weeks later we took Jason up on his offer. We travelled south of Newbury, Willie full of anticipation...so excited. After a quick cup of tea, Willie dragged us by the hand back outside....Jason got on the front, me on the back and Jodie picked Willie up and put him in the middle - sandwiched tightly between us. I put my arms either side of him and held onto Jason......arghhhhhhhhhhhh I shrieked as Jason put it into full throttle and this 'mass hoovis' 1500 mean machine did a virtual wheelie as we took off at top speed...yay Willie was shouting and laughing...arghhhhhhhhhhh I was screaming like a baby, scared out of my wits...and realising that the emergency bag was back at the car.

Jason swerved fast round the lane swishing this way and that. I was convinced we were going to be mushed into a tree. We had no helmets between us. Willie was so tightly sandwiched between my wide short body and Jason's fairly big torso I felt he wouldn't spin off anywhere. However I didn't rate our chances if we smashed into a tree...I consoled myself by thinking at least we would go to
Heaven together. Zoe would approve of my dedication to duty on that one.

It was the first time Willie had been more than 10 foot from the emergency bag, going 30mph on a motorbike round bendy narrow lanes without a helmet. Carefree and adventurous - the perfect ride ...Willie kept shouting with glee loving it, I was still pooing my pants. Zoe and Jodie videod it all.  This poignant footage was used at the end of Willies celebration of life. We played it to 'Ground control to Major Tom' ...Willies favourite song of all times...the lyrics appropriately pouring out whilst Willie waved goodbye on Kawasaki 1500 to his family and friends...incredible day, incredible memories and incredible footage.

Shortly afterwards Jason and Jodie had to return to New Zealand...the mission of those two angels in England complete. It was this moment that capped all moments, the icing on the cake. A cake made from so many delightful ingredients on this final lap...a finale to a life well lived, a program I believe put together by The Master, The a God of The universe who cares, who really does care about the small details, with plans for this final chapter beyond our ideas, beyond Willies wildest dreams...Amazing Grace...How sweet the sound.