How many of you have taken your first born to the doctors for their first jab? You know it's for their own good, prevention is better than cure...but still your stomach churns..this little being that trusts you completely....who has only felt love and hugs since they were born is now going to have a sharp needle prick in their leg. Whilst you hold them. It's possibly the hardest moment since you first held them in your arms, and made a silent heartfelt promise that you would never let any harm come to them.
Racked with guilt, tears welling up in your eyes you turn away as the nurse jabs them. Your baby may shriek, cry out a little or just give you that questioning look of why? ...
Whatever your experiences I'm sure it never got easier with the future jabs and subsequent children.
Willies chemotherapy was possibly the hardest task I ever had to assist with. Looking back it's no
wonder Zoe found it so painful to witness. During the operations he had reservoirs implanted just beneath the skull strategically placed into the cysts that had formed. These were to be used to drain the fluid from the cysts and administer bleomycin a chemotherapy drug.
Willie had to go up to The Radcliffe Infirmary once a week to have chemo. It took about 2-3 minutes to inject the bleomycin into each of the two reservoirs so the doctors took the decision to not put him under a general but just get it over with quickly. The trauma and risk of a general anasthetic would have been almost as bad. Willie hated the gas to put him out and the cannula they had to insert into his hand every time and afterwards the recovery time would have been even longer.
I am sure the doctors considered all things when deciding the best way forward but I guess it didn't make it any easier for them when they had to administer the treatment. It was imperative that Willie did not move a millimetre whist they inserted the needle. It was a precision procedure. I admire the dedication and skill of these incredible men. They also have feelings and it must be a two edged sword knowing you are doing your best to beat the tumour yet witnessing a young child in utmost distress. Their bedside manner remained a constant. Professional yet tender, efficient yet empathetic.
So we have a squirming 3 year old and a doctor insisting he does not move - at all. It could be a matter of life and death if the needle went in the wrong place. The first time Willie had no idea what was coming...and went into the treatment room like a lamb to the slaughter. I think he got suspicious when I tucked his little arm under mine and pulled him tight towards me then as directed by the medical team, I put my other arm across his sweet face and held his head in my hand pressing it into my shoulder.
He got suspicious and started to wriggle just as the nurse firmly grasped his legs ....he tried to move but was in a such a tight hold he could only scream out in fear and frustration. I felt for the nurses to, I guess they never really 'got used to' seeing young children in distress. They kept a smile on their faces in quiet empathy.
Doctor MacCauley carefully injected the chemotherapy into the reservoirs. He screamed incessantly, it sounded like he was in excruciating pain (Willie not the doctor). He must have felt the needle and bleomycin going into the cyst. Poor Willie, this definitely was a traumatic time for him and for his mum witnessing it all from a chair. Sadly as always Zoe was unable to hold him due to her bad spine, so had to watch helpless from the sideline.
Zoe insisted he laid down on a bed in the ward once it was over.. He was tearful for an hour or so. After a few hours we took him home. I wasn't sure who was the most traumatised - Willie for the agony or Zoe breaking her heart watching him suffer. As usual I found food a real comfort, and enjoyed a good canteen cooked lunch. At times such as these I have always wondered why I don't smoke..it is far more expected to puff on a cigarette than gulp down some huge meal, more expected and probably more accepted.
The following week Zoe asked if they could be ready 'to go' the minute we walked through the door as she knew Willie would remember. He certainly did and started screaming "noooo' as we headed towards the treatment room. Another few minutes of horrendous screaming...I felt so guilty holding him so tight knowing how much he hated it, but in true Willie fashion he never held it against me, not even for a minute. He trusted me and the doctors and nurses..even at three years old he understood somehow it was for his good.
The third visit I suggested Zoe stayed at home, she wasn't keen as she felt she should be there for him
when undergoing something so important and serious. I convinced her he would be ok, and I trundled off to Oxford - Willie loved his mum best of all without a doubt but like all children made less fuss and coped better when mum wasn't around. It also gave Zoe a 'recharge her batteries' time. (As I'm writing this I realise I was indeed very bossy and controlling..oops..sorry Zoe x)
The half hour journey was a mix of listening to Cat Stevens..'father,son', spotting roadworks, electric generators, combine harvesters, transporter lorrys...(bonus if carrying a tractor)..and general silly chit chat. This time we also made up a little rhyme to sing whilst David administered the drug. Willie seemed quite happy with my efforts and was giggling at the thought of singing it to his doctor.
Willie remained stoic and brave as we waited in the ward playroom. Distracted by toys, the toy kitchen was another favourite as we could invent disgusting dinners to take into the treatment room
for the doctor to enjoy! Hamburger with bogey sauce, an all time favourite. It all changed when the nurse came and nodded her head...Willie knew instantly what was coming and decided even singing our new song wasn't enough to see him through.
Picking him up whilst he struggled and squirmed wasn't easy and I tried to console him and reassure him as I carried the reluctant patient into the room where Dr MacCauley was waiting.
I raised my voice above the tears reminding Willie we had a surprise for the doctor. He momentarily went quiet as I began...."David is my doctor short and fat, he trumps like this and he trumps like that..' The disgruntled look on the doc's face made me realise the choice of words were probably far too disrespectful...even if Willie did start to giggle...which I hadn't thought to clearly about. He was meant to be very still - oops. The doctor waited patiently for the giggles to stop, looked as though he wanted to stick the needle into me instead...and then got on with it. I know it wasn't politically correct, but as I'm short and fat I thought I had license to sing those words..( Dr David actually was not that short and definitely not fat)
More screaming for the duration of the treatment...but as we left he actually said goodbye to the doctor and nurse with a smile and we returned to the playroom . We had to wait for a. Minimum of 30 minutes to ensure there were no adverse effects before we could leave the hospital.
Willie bounced back quickly and singing our little ditty (out of earshot of the staff) we trotted off down the corridor and back home to his anxious mum. I cannot remember exactly how many
treatments he received but I know it did reduce the cysts and thus delayed the radiotherapy option.
They were holding off as long as they could for this as it would destroy brain cells for future learning. Whatever Willie knew and understood at the time of treatment - he would remain like that forever. So the more he learnt and knew before radiotherapy began the better chance he had of 'growing up'.
Sadly the chemotherapy only did a temporary job and the time came when an unenviable decision had to be made by Willie's parents in conjunction with the surgical team's expertise. Although the tumour had probably more influence than either of these two parties - as it definitely had a mind of its own and continued to grow in complication and stature. The time to start radiotherapy came sooner than anticipated and Willie was admitted to have a general anaesthetic to make a hard plastic mask to cover his whole face. This would protect the areas unaffected by the tumour whilst the penetrating rays destroyed the growing and deadly cysts, sadly along with good brain cells.
Willie was now 4 years old...it was the start of a long few weeks.
Willie
Little Angel, in hospital 5 years old.
Thursday, February 20, 2014
Tuesday, February 11, 2014
The little wise man...
Following the miracle operation, Willie underwent radiotherapy.
The huge doses of radiation to the brain to curb the cysts cost Willie millions of brain cells. Once the treatment had concluded they called him in for an assessment. It was to involve spending at least an hour with the child psychologist completing various tests/questions on a very long form.
Zoe was not happy at all as she felt Willie wouldn't co-operate easily and it would be too stressful to sit there under scrutiny for an hour. To be honest I didn't hold out much hope but understood that it could be vital research for those children affected in the future when big decisions had to be made.
I persuaded Zoe to let me take him along with Dhelia their current au pair, as Willie was more likely to co-operate in the absence of his mum. We set off as a slightly apprehensive team of three!
Dhelia was a lovely au pair with older children she was providing for, back in the Phillipines...she had been with the family for a few months and adored Willie and Rheanna. A lovely Christian lady she had learnt how to 'be 'with Willie and was very much a part of 'Willies world'. (She was caught once by Zoe, throwing wet paper towels onto the ceiling..I wasn't there, but like all of you who knew this little rascal - you can imagine the hearty giggles as each one splatted...)
Together we tried to sell this trip to Willie as an adventure, although I believe Willlie possibly dreaded every hospital visit as circumstances could change so dramatically and so swiftly. He did humour us though and came along quite happily.
This visit however was not going to involve needles, chemo, masks, or any pain at all. A huge relief to him I'm sure when he left without being pricked and prodded.
The female psychologist came into the waiting room and took Willie by the hand. I was concerned about him going off on his own, as I had promised Zoe I would ensure he was not afraid at any point. He let smiling and virtually skipping into the distance...the kind lady reassuring me she would bring him straight back at any time if he got upset. apparently it would have been too distracting with me there to..
It was over an hour later when they came back to get me, and I followed the two of them into a small room. It had been a surprise and a relief that Willie appeared contented and happy, enthusiastically pulling me by the hand to 'show me' his handiwork.
The psychologist showed me the enormous amount of questions/tests they had got through, apparently Willie had co-operated and sat still for the whole hour...the lady must have been gifted I concluded in the art of bogey talk. But weirdly she appeared very sensible. A lovely soft spoken lady she also look relieved.
We left on top of the world...lovely day, tasty lunch out for three, and task completed effectively 'sans' trauma..result!
I was driving back down the A34 towards Newbury pondering on just how successful against all odds that had been. Delhia was as pleasantly surprised as I was. She was sitting in the back to keep Willie company.
Willie was smiling in his car seat. I glanced at him in the mirror, feeling like a very proud 'mummy'...
smiling broadly I caught his eye.."Thank you Willie, thank you sooo much for being such a well behaved boy and doing those tests so brilliantly, thank you - you were amazing.."
To which he replied quite simply.."Don't thank me, Thank God - just think what He has done for us."
I nearly crashed the car!
4 years old, apparently special needs, couldn't read his own name - yet had the wisdom of Solomon..the mind of a man far beyond his 4 years....I reflected ..'did Willie actually meet Jesus when the doctors almost lost him?, had he 'died and come back to life.?' ...how else, where else? ...Willie would not have been interested in such a conversation...how would a 4 year old understand the concept of Jesus's ultimate sacrifice?...I realised at that moment that Willie had a very deep and real faith...one that was going to uphold him through the next few years...and into eternity when the time came.
Awesome..I still shiver in awe as I recall those words spoken with such clarity and authority..
Yes Willie Foster-Horton, you had so much to teach me...and that was just the beginning.
Thursday, February 6, 2014
A very long night...
It's very hard to convey the complexity of Willies tumour and subsequent operations. It involved tubes, drains, chemotherapy, radiotherapy, and removing bits of tumour by careful dexterity and open brain surgery....six operations in a few months...and Willie continued to bounce back...the chemotherapy they injected into the cysts produced by the tumour - was possibly the most barbaric and painful for this brave soldier to endure. No one will ever know the level of pain Willie was in. Did he ever have a day without a twinge..what level was 'normal' and what constituted severe or excruciating pain. No one as far as we know had survived this long with a tumour this large and active.
Although it wasn't a cancerous tumour..ie it would not spread to other parts of his body..it was forever active in his brain..as we discovered one long dark night.
It was discovered soon after the first big operation that he had lost the use of his left eye, he had been compensating so well it had gone unnoticed. For a while he had ok vision in his right eye. But as the cyst behind this eye filled with fluid it squished the eye vessel. One day he woke up blind. He was
only 3 years old. How do you explain to someone so young about 'blindness'. Zoe did her best as Willie adapted to not being able to see. She told me how Willie had just stopped walking one day in the middle of the shopping centre..he sat down with a heavy sigh, pleading..."Will somebody just turn the lights back on." Poor Zoe, what do you answer to that.
Willie was scheduled to have a 'small op' one Monday Evening to try and regain the sight in his right
eye. They had been waiting for some special tubing from America. I hadn't been present at the
hospital for all the operations as often it was easier for us to have Rheanna. Zoe always had an au pair in situ.(and for all the au pairs following this...I will be blogging about you very special people very soon)...but it was nice for Rheanna to be distracted by chaos in our very busy household.
Rheanna was just a year younger than my third son and fitted into our family very easily as she could be a bit of a Tom boy. She was always a delight to look after, she thrived on taboo cereal and chocolate..oops! Our 4 sons soon adapted to having a surrogate sister and still today she is very much a part of our family. Rheanna never questioned when Willie and her mum were coming home, and often would get upset at leaving us when they did. This is not a reflection on Zoe, possibly more to do with chocolate :( - Also as Willie was often fragile..and Zoe was so tired after a long emotional stay in hospital, Rheanna had to be calm and quiet..both of which did not come naturally to this bouncy young lady. This tumour affected them all in different ways.
It seemed odd to be driving Zoe and Willie up to Oxford on a Monday evening, but as the specialist team were so busy, they were fitting in an extra operation at the end of the day. As usual word was out for the prayer warriors to be vigilant, and I prayed for Willie before he went under the anaesthetic. Knowing I was covered in prayer as I journeyed with them was essential for my confidence, knowing The Lord was with us. The surgeons were going in as a matter of urgency to try and repair the damaged eye vessel. It was predicted to be a fairly quick operation for Willie..only 3 hours.
After saying goodbye to Willie..well cuddling him whilst they put him under... Willie by now had become very suspicious and even though we tried to fool him, he sensed where he was and began to get hysterical as we entered the anesthetists room. He knew he would wake up in pain bless him. They were always swift to act and whilst I held him in my arms they put the gas mask over his little face and within seconds he would go limp. Zoe made sure no one mentioned the word operation beforehand as he would fret like crazy for days if he knew one was imminent.
I felt for Zoe so much, not only is it the worse feeling in the world watching your child about to undergo surgery, but because she could not pick Willie up with her bad back, she had to be content to watch and then give him a little kiss just before they wheeled him through the swing doors.
Zoe and I walked slowly back through the maze of corridors...back to the parents waiting room on the ward. This room was quite familiar by now. Occasionally we walked to get a cup of tea....I had normal tea...Zoe had her usual big mug, certain strength with a big blob of honey..which was one of Willies favourites to. It's funny how God can bring people together that are quite opposite in many ways...yet bind them together in a deep love and concern for a sick child. We talked about all sorts, I learnt about humous, organic food and non battery chickens...Zoe learnt to never eat in my kitchen lol.
We did laugh a lot together..I believe God gave us a similar warped sense of humour which was often used to lighten what otherwise may have been an impossible moment. You can't be worried and negative whilst waiting for news...it makes every second feel like an hour. Instead you think of positive things, tell poignant stories of Willie and Rheanna's escapades...giggle at the funny or embarrassing moments...a little bit of God talk...(well it had to be done)..and prayer..for Willie, Rheanna, Zoe and David. I always prayed that God's Will be done for Willie as He knew the bigger picture..and the future Willlie had in store. To pray he lived May not have been the wisest prayer if the brain was damaged so much he would spend the rest of his life in a vegetative state.
The time ticked by...11pm..11.10pm..11.20pm..we waited expectantly looking towards the door - willing it to be opened. For every extra minute passed the expected three hour mark, the more chance there had been complications. Zoe started to get fidgety at 12...at 1am the door finally opened..I hadn't realised until then how I had been gripping the edge of my seat...my heart was pounding...a nurse announced that Willie was still in theatre and there had been a big bleed...they were still working on him and as soon as Dr MacCauley was finished he would be over to explain the situation.
As the nurse left my whole being started shaking and I watched Zoe for a reaction...amazingly she did not go hysterical, but looked numb. I hugged her and prayed for her son like never before. I felt sick as we sat more subdued and waited and waited...eventually after watching the hands of the clock ticking painfully slowly..the tick tock getting louder by every breath stopping minute. David MacCauley arrived, looking exhausted and very concerned, it was nearly 4am.
How do doctors do this job, so many amazing life saving operations and yet in impossible surgical complexities you have to sit and explain to the parents news they have been dreading. David MacCauley was a humble man, and had a lovely peaceful way of talking with a delightful soft Irish accent (I am rubbish with accents..he could have been Scottish lol.) His genuine sadness and sense of 'helplessness' was conveyed as he talked us through a 4 hour major brain bleed. He spent a few minutes describing Willies tumour...it was far bigger than anything seen before - worldwide. The intricate world wide doctors web had unearthed no suggestions as to how to treat it. For any complicated illness there was a central computer hub where all the top surgeons visited often to try and help their fellow men around the world. Experts in the craniopharyngioma field were baffled by the size and nature of this tumour. Images went round the world several times over in the hope someone somewhere could identify with the enormity of it and give guidelines on future treatments.
The top medics were aghast. No-one, not one (and believe me they always like to suggest something - David explained to us) made a comment. It was an entirely new entity in the world of brain tumours behaviour. He was demonstrating with his hands whirling around, saying it's got arms shooting off this way and that entangling themselves around blood vessels and veins..producing cysts filling with fluid, causing untold damage on their journey, ...after he had left, me and Zoe looked at each other and both said at the same time..he's got an alien in his brain.
The doctor explained how they almost gave up trying - he even called in extra help from the talented Peter Richards his counterpart. In his humble fashion he accredited the stop of bleeding to Peter. Between them they had finally stopped the flow. Willie was still under sedation, on a life support system, he was to be transferred over to the John Radcliffe by ambulance into intensive care.
He went on gently..."We have no idea yet whether Willie will pull through, he could be dead already, but the life support will keep his body functioning. We were within a second from losing him altogether, so I would not be surprised if the bleeding has started up again. Even if Willie remains stable after we turn off the life support in the morning, the swelling to the brain has been so severe for
4 hours, that Willie will be in a vegetative state for the rest of his life."
David was working in Scotland at the time, so we had had to call him in the early hours of the morning whilst the doctor was present. I cannot tell you how incredible Dr MacCauley was..he was in no rush to go...he was kind and empathetic ...passionate yet professional...no trace of him working 24/7 on complex operations without a wink of sleep. I spoke to Willies dad first, explaining as gently as I could what had gone wrong. He was devastated and felt helpless being so far away. What had become almost routine in their lives, suddenly had turned into the worst possible scenario, their worst fears coming true :( - The doctor then explained the position...quietly and patiently repeating himself as David (Willies dad) absorbed the news.
He then jumped on the next available plane to be there when or if Willie woke up.
Dr MacCauley offered for us to go and say goodbye in the operating theatre before he was transferred. He left us with a nurse to accompany us on the long trek through dimly lit, very long corridors retracing our earlier footsteps in silence.
If ever there has been a moment of sheer admiration of a mothers pure love for her child I saw it in Zoe that night...as mentioned previously Zoe suffers from sciatica, sometimes extreme pain owing to a crumbling spine, held together with nuts and bolts, stress can make it worse.The walk to say goodbye to her son was one of sheer grit and determination. With a walking stick as an aid she limped at a fast rate, upright in stature, obviously in serious pain, taking the biggest strides her failing body allowed her to take, her face set towards the goal...the longest walk ...I did offer a wheelchair to help her, but no - a mothers love had no place for luxuries such as wheelchairs, this was a walk for her young boy, maybe the last one she would do. I followed closely behind, wondering how Zoe would cope with what was ahead, with the realisation he may already be brain dead. I was in awe she could walk one step let alone the hundreds it took to get there.
Finally after what seemed an age we went down in a very cranky lift, and were shown into a very sterile room...a big operating theatre, machines and gadgets everywhere. To one side, silently on an operating table lay a little angel. His head wrapped carefully in a bandage, dressed in a white hospital gown and covered with white cotton blanket. Dim spotlights on him, machines wired up to him to keep him alive, several nurses surrounding the trolley bed looking sad and subdued. Willie looked beautiful, with a little smile on his very peaceful face, definitely like the images of angels we have grown up with.
I sensed a peace that passed all understanding as I entered that room. There was an overwhelming feeling that there were choirs of angels filling that space, Willie had a 'glow' all around
him. I truly hoped with all my heart Zoe would feel it to. It was surreal. Zoe sat on a chair kindly offered by a nurse, and gently held his small hand, limp in hers. She bent forward very carefully and kissed him gently on his cheek. No tears, but smiling as she rose from the chair and walked slowly towards the door. I bent and kissed this cherub to, then followed Zoe out.
We stood still, moved by what we had just experienced. Peacefully Zoe said -"If Willie does have to leave us, I would accept him going tonight, did you feel that in there?"
"Yes, without a doubt there was a presence filling the whole room, I'm sure you could even sense the angels singing".
Zoe bravely walked back at a much slower pace, more contented than I would ever have believed in such sad circumstances, but God is Gracious to us all and I believed that moment was an enlightening moment for Zoe, an acceptance of what is meant to be, will be and an incredible wisdom that if this was Willies time to go, then surely with that tangible feeling of love and a taste of Heaven we had just experienced - he would be ok.
We were shown back to his room on the ward where there were 2 beds. It was a small private room due to the nature of his surgery. It was 530am. I texted anyone I knew would be getting up that early to start the prayer chain off for this new day, this new situation.For Zoe, Rheanna, David and the grandparents...the thought of what might be, was too big to contemplate. I kept thinking a doctor wouldn't tell a parent their child might already be dead unless there was a good chance it was true.
God's Grace continued to pour into our room as we got into bed. We even had a giggle at the doctors graphic description of the alien, cleverly animated with his hands. we chatted for a while as I wondered how on earth Zoe would get any sleep - but Contrary to every rule in the book of sleepness nights, Zoe was soon sleeping like a baby ..and I.. snoring like a pig...
The knocking at the door woke us with a start, it was 9am. I jumped up and opened the door...there clean shaven, showered and in a smart shirt and tie was the amazing Dr MacCauley...who just 4 hours earlier had been looking tired, unshaven and in a surgeons gown. What a transformation. I on the other hand was still unshaven, unshowered, wearing the same bodily odour scented clothes I had slept in....not my finest moment.
With a huge grin on his face he announced "I've just been to the John Radcliffe to see Willie (note to self - he IS superman..did he actually sleep?) and although we had anticipated slowly reducing the life support to bring him round, he was trying to rip all the tubes out! We have had to increase the sedation in order that he doesnt move for a few more hours...Praise God. Tumour nil..Willie Foster Horton 1... The doctor was in shock and disbelief...even more so when 24 hours later he had to 'answer' one of those special phone calls..'der der der David MacCauley?..'
I had just witnessed a miracle first hand ..Willie unscathed by the massive bleed, came out of that. Operation better than he went in... HE COULD SEE AGAIN.
Hallelujah Hallelujah...HALLELUJAH...this was not Willies time after all..he still had much to teach us.
Although it wasn't a cancerous tumour..ie it would not spread to other parts of his body..it was forever active in his brain..as we discovered one long dark night.
It was discovered soon after the first big operation that he had lost the use of his left eye, he had been compensating so well it had gone unnoticed. For a while he had ok vision in his right eye. But as the cyst behind this eye filled with fluid it squished the eye vessel. One day he woke up blind. He was
only 3 years old. How do you explain to someone so young about 'blindness'. Zoe did her best as Willie adapted to not being able to see. She told me how Willie had just stopped walking one day in the middle of the shopping centre..he sat down with a heavy sigh, pleading..."Will somebody just turn the lights back on." Poor Zoe, what do you answer to that.
Willie was scheduled to have a 'small op' one Monday Evening to try and regain the sight in his right
eye. They had been waiting for some special tubing from America. I hadn't been present at the
hospital for all the operations as often it was easier for us to have Rheanna. Zoe always had an au pair in situ.(and for all the au pairs following this...I will be blogging about you very special people very soon)...but it was nice for Rheanna to be distracted by chaos in our very busy household.
Rheanna was just a year younger than my third son and fitted into our family very easily as she could be a bit of a Tom boy. She was always a delight to look after, she thrived on taboo cereal and chocolate..oops! Our 4 sons soon adapted to having a surrogate sister and still today she is very much a part of our family. Rheanna never questioned when Willie and her mum were coming home, and often would get upset at leaving us when they did. This is not a reflection on Zoe, possibly more to do with chocolate :( - Also as Willie was often fragile..and Zoe was so tired after a long emotional stay in hospital, Rheanna had to be calm and quiet..both of which did not come naturally to this bouncy young lady. This tumour affected them all in different ways.
It seemed odd to be driving Zoe and Willie up to Oxford on a Monday evening, but as the specialist team were so busy, they were fitting in an extra operation at the end of the day. As usual word was out for the prayer warriors to be vigilant, and I prayed for Willie before he went under the anaesthetic. Knowing I was covered in prayer as I journeyed with them was essential for my confidence, knowing The Lord was with us. The surgeons were going in as a matter of urgency to try and repair the damaged eye vessel. It was predicted to be a fairly quick operation for Willie..only 3 hours.
After saying goodbye to Willie..well cuddling him whilst they put him under... Willie by now had become very suspicious and even though we tried to fool him, he sensed where he was and began to get hysterical as we entered the anesthetists room. He knew he would wake up in pain bless him. They were always swift to act and whilst I held him in my arms they put the gas mask over his little face and within seconds he would go limp. Zoe made sure no one mentioned the word operation beforehand as he would fret like crazy for days if he knew one was imminent.
I felt for Zoe so much, not only is it the worse feeling in the world watching your child about to undergo surgery, but because she could not pick Willie up with her bad back, she had to be content to watch and then give him a little kiss just before they wheeled him through the swing doors.
Zoe and I walked slowly back through the maze of corridors...back to the parents waiting room on the ward. This room was quite familiar by now. Occasionally we walked to get a cup of tea....I had normal tea...Zoe had her usual big mug, certain strength with a big blob of honey..which was one of Willies favourites to. It's funny how God can bring people together that are quite opposite in many ways...yet bind them together in a deep love and concern for a sick child. We talked about all sorts, I learnt about humous, organic food and non battery chickens...Zoe learnt to never eat in my kitchen lol.
We did laugh a lot together..I believe God gave us a similar warped sense of humour which was often used to lighten what otherwise may have been an impossible moment. You can't be worried and negative whilst waiting for news...it makes every second feel like an hour. Instead you think of positive things, tell poignant stories of Willie and Rheanna's escapades...giggle at the funny or embarrassing moments...a little bit of God talk...(well it had to be done)..and prayer..for Willie, Rheanna, Zoe and David. I always prayed that God's Will be done for Willie as He knew the bigger picture..and the future Willlie had in store. To pray he lived May not have been the wisest prayer if the brain was damaged so much he would spend the rest of his life in a vegetative state.
The time ticked by...11pm..11.10pm..11.20pm..we waited expectantly looking towards the door - willing it to be opened. For every extra minute passed the expected three hour mark, the more chance there had been complications. Zoe started to get fidgety at 12...at 1am the door finally opened..I hadn't realised until then how I had been gripping the edge of my seat...my heart was pounding...a nurse announced that Willie was still in theatre and there had been a big bleed...they were still working on him and as soon as Dr MacCauley was finished he would be over to explain the situation.
As the nurse left my whole being started shaking and I watched Zoe for a reaction...amazingly she did not go hysterical, but looked numb. I hugged her and prayed for her son like never before. I felt sick as we sat more subdued and waited and waited...eventually after watching the hands of the clock ticking painfully slowly..the tick tock getting louder by every breath stopping minute. David MacCauley arrived, looking exhausted and very concerned, it was nearly 4am.
How do doctors do this job, so many amazing life saving operations and yet in impossible surgical complexities you have to sit and explain to the parents news they have been dreading. David MacCauley was a humble man, and had a lovely peaceful way of talking with a delightful soft Irish accent (I am rubbish with accents..he could have been Scottish lol.) His genuine sadness and sense of 'helplessness' was conveyed as he talked us through a 4 hour major brain bleed. He spent a few minutes describing Willies tumour...it was far bigger than anything seen before - worldwide. The intricate world wide doctors web had unearthed no suggestions as to how to treat it. For any complicated illness there was a central computer hub where all the top surgeons visited often to try and help their fellow men around the world. Experts in the craniopharyngioma field were baffled by the size and nature of this tumour. Images went round the world several times over in the hope someone somewhere could identify with the enormity of it and give guidelines on future treatments.
The top medics were aghast. No-one, not one (and believe me they always like to suggest something - David explained to us) made a comment. It was an entirely new entity in the world of brain tumours behaviour. He was demonstrating with his hands whirling around, saying it's got arms shooting off this way and that entangling themselves around blood vessels and veins..producing cysts filling with fluid, causing untold damage on their journey, ...after he had left, me and Zoe looked at each other and both said at the same time..he's got an alien in his brain.
The doctor explained how they almost gave up trying - he even called in extra help from the talented Peter Richards his counterpart. In his humble fashion he accredited the stop of bleeding to Peter. Between them they had finally stopped the flow. Willie was still under sedation, on a life support system, he was to be transferred over to the John Radcliffe by ambulance into intensive care.
He went on gently..."We have no idea yet whether Willie will pull through, he could be dead already, but the life support will keep his body functioning. We were within a second from losing him altogether, so I would not be surprised if the bleeding has started up again. Even if Willie remains stable after we turn off the life support in the morning, the swelling to the brain has been so severe for
4 hours, that Willie will be in a vegetative state for the rest of his life."
David was working in Scotland at the time, so we had had to call him in the early hours of the morning whilst the doctor was present. I cannot tell you how incredible Dr MacCauley was..he was in no rush to go...he was kind and empathetic ...passionate yet professional...no trace of him working 24/7 on complex operations without a wink of sleep. I spoke to Willies dad first, explaining as gently as I could what had gone wrong. He was devastated and felt helpless being so far away. What had become almost routine in their lives, suddenly had turned into the worst possible scenario, their worst fears coming true :( - The doctor then explained the position...quietly and patiently repeating himself as David (Willies dad) absorbed the news.
He then jumped on the next available plane to be there when or if Willie woke up.
Dr MacCauley offered for us to go and say goodbye in the operating theatre before he was transferred. He left us with a nurse to accompany us on the long trek through dimly lit, very long corridors retracing our earlier footsteps in silence.
If ever there has been a moment of sheer admiration of a mothers pure love for her child I saw it in Zoe that night...as mentioned previously Zoe suffers from sciatica, sometimes extreme pain owing to a crumbling spine, held together with nuts and bolts, stress can make it worse.The walk to say goodbye to her son was one of sheer grit and determination. With a walking stick as an aid she limped at a fast rate, upright in stature, obviously in serious pain, taking the biggest strides her failing body allowed her to take, her face set towards the goal...the longest walk ...I did offer a wheelchair to help her, but no - a mothers love had no place for luxuries such as wheelchairs, this was a walk for her young boy, maybe the last one she would do. I followed closely behind, wondering how Zoe would cope with what was ahead, with the realisation he may already be brain dead. I was in awe she could walk one step let alone the hundreds it took to get there.
Finally after what seemed an age we went down in a very cranky lift, and were shown into a very sterile room...a big operating theatre, machines and gadgets everywhere. To one side, silently on an operating table lay a little angel. His head wrapped carefully in a bandage, dressed in a white hospital gown and covered with white cotton blanket. Dim spotlights on him, machines wired up to him to keep him alive, several nurses surrounding the trolley bed looking sad and subdued. Willie looked beautiful, with a little smile on his very peaceful face, definitely like the images of angels we have grown up with.
I sensed a peace that passed all understanding as I entered that room. There was an overwhelming feeling that there were choirs of angels filling that space, Willie had a 'glow' all around
him. I truly hoped with all my heart Zoe would feel it to. It was surreal. Zoe sat on a chair kindly offered by a nurse, and gently held his small hand, limp in hers. She bent forward very carefully and kissed him gently on his cheek. No tears, but smiling as she rose from the chair and walked slowly towards the door. I bent and kissed this cherub to, then followed Zoe out.
We stood still, moved by what we had just experienced. Peacefully Zoe said -"If Willie does have to leave us, I would accept him going tonight, did you feel that in there?"
"Yes, without a doubt there was a presence filling the whole room, I'm sure you could even sense the angels singing".
Zoe bravely walked back at a much slower pace, more contented than I would ever have believed in such sad circumstances, but God is Gracious to us all and I believed that moment was an enlightening moment for Zoe, an acceptance of what is meant to be, will be and an incredible wisdom that if this was Willies time to go, then surely with that tangible feeling of love and a taste of Heaven we had just experienced - he would be ok.
We were shown back to his room on the ward where there were 2 beds. It was a small private room due to the nature of his surgery. It was 530am. I texted anyone I knew would be getting up that early to start the prayer chain off for this new day, this new situation.For Zoe, Rheanna, David and the grandparents...the thought of what might be, was too big to contemplate. I kept thinking a doctor wouldn't tell a parent their child might already be dead unless there was a good chance it was true.
God's Grace continued to pour into our room as we got into bed. We even had a giggle at the doctors graphic description of the alien, cleverly animated with his hands. we chatted for a while as I wondered how on earth Zoe would get any sleep - but Contrary to every rule in the book of sleepness nights, Zoe was soon sleeping like a baby ..and I.. snoring like a pig...
The knocking at the door woke us with a start, it was 9am. I jumped up and opened the door...there clean shaven, showered and in a smart shirt and tie was the amazing Dr MacCauley...who just 4 hours earlier had been looking tired, unshaven and in a surgeons gown. What a transformation. I on the other hand was still unshaven, unshowered, wearing the same bodily odour scented clothes I had slept in....not my finest moment.
With a huge grin on his face he announced "I've just been to the John Radcliffe to see Willie (note to self - he IS superman..did he actually sleep?) and although we had anticipated slowly reducing the life support to bring him round, he was trying to rip all the tubes out! We have had to increase the sedation in order that he doesnt move for a few more hours...Praise God. Tumour nil..Willie Foster Horton 1... The doctor was in shock and disbelief...even more so when 24 hours later he had to 'answer' one of those special phone calls..'der der der David MacCauley?..'
I had just witnessed a miracle first hand ..Willie unscathed by the massive bleed, came out of that. Operation better than he went in... HE COULD SEE AGAIN.
Hallelujah Hallelujah...HALLELUJAH...this was not Willies time after all..he still had much to teach us.
Sunday, February 2, 2014
How could I forget 'plectrums'...
Thank you Julia for the reminder of plectrums - guitar plectrums a regular visitor to Willies pockets. He would take it out and show you on his opened hand...inviting you to admire it with the same enthusiasm he felt. I am surprised I had forgotten such a favourite pocket treasure, just shows how much of the small detail goes missing from your mind. It's great that so many of you are reminding me by your own memoires...thank you and keep them coming.
The plectrum was very much connected to his deep love of all things instrumental - especially the guitar. I have many pictures in my mind of him strumming away to some music on his small guitar, or watching and listening to anyone who could play a good tune. Again jumping ahead, his jamming sessions with a guy called Jason from Church, both of them sitting on his bed, guitars in hand strumming a made up tune - pure Heaven watching them.
Music is accessible to those who are totally blind, and Willie proved this over and over as he 'felt' his way round the strings of his half size guitar. He never had a lesson, he was never taught the notes but by sense, hearing and feeling he could play beautiful music. Those last weeks felt like a pre-Heaven programme designed by a God for a very special and fulfilling journey into eternity. I continue to Praise God for His awesome provision throughout Willies entire life, and especially the last few weeks.
When Willie was four years old my eldest son Simon had written 'The wee and pooh song' for GCSE music. The teacher wasn't overly impressed, but it was a real favourite of Willies. The perfect lyrics. Shortly after one of the many operations he endured, he was sitting on a child's green plastic garden chair, on our decking listening to Simon singing 'the song - eventually renamed 'Willies song'. Willie had his hair shaved from the front to halfway across his head. The recent scar still red with thirty odd stitches intact - ran from one ear over the top of his scalp and down to the other ear. As Simon played and paused at appropriate words - in full animation, Willie literally almost laughed his head off. Zoe took a video on her phone (sadly phones in those days didn't have the quality of today) but replaying that video was heartwarming watching him throwing his head backwards and forwards guffawing loudly, saying "again, again.." As soon as the song ended.
One of my most profound discoveries of God's provision was 'buskers'. Buskers came in all shapes and sizes..and they came in abundance. My first experience of this overwhelming gift to Willie began in Oxford City centre. In the early days of recovery in between several operations that followed the
big one, we would venture from the Radcliffe Infirmary into the City - about 15-20 mins walk on short legs (mine). Willie would be in his pushchair for our adventure whilst Zoe caught up on much needed sleep or to have some quality time with Rheanna if she was visiting.
Often we would call in to the big Catholic Church almost adjacent to the hospital. It was always open and warm...we ventured in whispering as people knelt and prayed at the pews..maybe one or two people dotted around. As I had a dear Catholic friend I was familiar with lighting candles and praying for others.
Willie would get out of the pushchair and we would take a candle and place it on the metal tray. We would post the donation money in the box and then careful light it. We prayed for his mum, dad and Rheanna. We prayed for his tumour to get better, and that he wouldn't have pain. Recalling these precious moments I have tears streaming down my face and an intense desire to be there once again in that beautiful huge building with stain glass windows, cherubs, and statues of Jesus Christ. Those moments were indeed treasured moments. Those that knew Willies inability to be interested in kneeling and keeping still would have watched in awe.
Although Willie was used to me praying...we often prayed to Jesus for a busker to be performing on the way to the shops...as well as the big ones before an operation. I never got heavy with the religious side, mostly because Willie didn't tolerate heavy and serious subjects, that didn't involve the odd mention of a drill. Yet in this peaceful place ..he was happy to stop and light the candles, pausing to pray. He was quiet and reflective praying to Jesus for those he loved. His faith was increasing as his operations increased. I will write the next blog about the operation that went horribly wrong...and when I believe Willie met Jesus face to face. That was when I believe his personal faith journey truly began.
We would leave the candles burning as we continued on our way, quietly respecting others deep in prayer. Onto the beautiful city centre with its old architecture buildings, the old style blending happily with the new. Quaint shops next to huge department stores, street traders in abundance. Pedestrianised areas allowed people to mill about easily. Some evidently rushing in their lunch hour dressed in 'office attire', middle aged daughters happily shopping with their elderly mothers heading to one of the many coffee shops, tourists With their little guide book and camera at the ready, students on bikes parking them alongside the other 50 or so in one of the many designated places. So many people, and us...young boy with brain tumour, crazy lady weaving him in and out of the crowds until we found 'the busker'.
And we always found one much to Willies delight. It was not important as to what instrument he was playing ( I'm fairly certain they were all male) or what genre of songs he sang. It was the busker experience itself Willie loved. We would stop as close as we could depending on the crowds gathered around. As people wandered off we would move in until we had front row status. Willie would watch and listen in awe. Sometimes they had unusual instruments like a selection of African wooden pipes or a homemade instrument - but mostly his favourites - a keyboard or guitar.
We would watch for an hour at least, often Willies enthusiastic clapping and beaming smile enticed the performer over for a chat -.Willie would have lots of questions about the instruments and was
delighted when the busker handed him an instrument to join in. The joy of Buskers - if you know one or are indeed one yourself be assured that for many who walk on by - there are so many touched by your music. Long live Buskers! One day we were entertained for so long we went and bought the busker a McDonalds meal...to show our appreciation (Think that day I had no cash for Willie to throw into the cap..so used my card to pay for for dinner for him instead lol)
After a ten minute warning - we would reluctantly leave and head back to the hospital...Willie ringing on his imaginary phone 'da,da,da ( this was a mix between da and der but punchy like der. Der. Der.as he 'dialled the number' )
"Jesus" he said clearly and of course in my best Jesus voice I replied.."Yes Willie?" ..."Thank you so much for sending the busker" he said sweetly. "That's ok Willie, I'm glad you enjoyed him."
I can honestly say every time, yes every time we prayed for one, wherever we were...we would meet one. In Oxford or in Newbury...sometimes Reading...EVERY time. Since Wille got his wings I think I have only come across 2 or 3 at the most over the past few years... I am more than convinced God provided them, sometimes I reflected they may have been angels in disguise. But most certainly a huge Blessing from above. Amen to that!
The plectrum was very much connected to his deep love of all things instrumental - especially the guitar. I have many pictures in my mind of him strumming away to some music on his small guitar, or watching and listening to anyone who could play a good tune. Again jumping ahead, his jamming sessions with a guy called Jason from Church, both of them sitting on his bed, guitars in hand strumming a made up tune - pure Heaven watching them.
Music is accessible to those who are totally blind, and Willie proved this over and over as he 'felt' his way round the strings of his half size guitar. He never had a lesson, he was never taught the notes but by sense, hearing and feeling he could play beautiful music. Those last weeks felt like a pre-Heaven programme designed by a God for a very special and fulfilling journey into eternity. I continue to Praise God for His awesome provision throughout Willies entire life, and especially the last few weeks.
When Willie was four years old my eldest son Simon had written 'The wee and pooh song' for GCSE music. The teacher wasn't overly impressed, but it was a real favourite of Willies. The perfect lyrics. Shortly after one of the many operations he endured, he was sitting on a child's green plastic garden chair, on our decking listening to Simon singing 'the song - eventually renamed 'Willies song'. Willie had his hair shaved from the front to halfway across his head. The recent scar still red with thirty odd stitches intact - ran from one ear over the top of his scalp and down to the other ear. As Simon played and paused at appropriate words - in full animation, Willie literally almost laughed his head off. Zoe took a video on her phone (sadly phones in those days didn't have the quality of today) but replaying that video was heartwarming watching him throwing his head backwards and forwards guffawing loudly, saying "again, again.." As soon as the song ended.
One of my most profound discoveries of God's provision was 'buskers'. Buskers came in all shapes and sizes..and they came in abundance. My first experience of this overwhelming gift to Willie began in Oxford City centre. In the early days of recovery in between several operations that followed the
big one, we would venture from the Radcliffe Infirmary into the City - about 15-20 mins walk on short legs (mine). Willie would be in his pushchair for our adventure whilst Zoe caught up on much needed sleep or to have some quality time with Rheanna if she was visiting.
Often we would call in to the big Catholic Church almost adjacent to the hospital. It was always open and warm...we ventured in whispering as people knelt and prayed at the pews..maybe one or two people dotted around. As I had a dear Catholic friend I was familiar with lighting candles and praying for others.
Willie would get out of the pushchair and we would take a candle and place it on the metal tray. We would post the donation money in the box and then careful light it. We prayed for his mum, dad and Rheanna. We prayed for his tumour to get better, and that he wouldn't have pain. Recalling these precious moments I have tears streaming down my face and an intense desire to be there once again in that beautiful huge building with stain glass windows, cherubs, and statues of Jesus Christ. Those moments were indeed treasured moments. Those that knew Willies inability to be interested in kneeling and keeping still would have watched in awe.
Although Willie was used to me praying...we often prayed to Jesus for a busker to be performing on the way to the shops...as well as the big ones before an operation. I never got heavy with the religious side, mostly because Willie didn't tolerate heavy and serious subjects, that didn't involve the odd mention of a drill. Yet in this peaceful place ..he was happy to stop and light the candles, pausing to pray. He was quiet and reflective praying to Jesus for those he loved. His faith was increasing as his operations increased. I will write the next blog about the operation that went horribly wrong...and when I believe Willie met Jesus face to face. That was when I believe his personal faith journey truly began.
We would leave the candles burning as we continued on our way, quietly respecting others deep in prayer. Onto the beautiful city centre with its old architecture buildings, the old style blending happily with the new. Quaint shops next to huge department stores, street traders in abundance. Pedestrianised areas allowed people to mill about easily. Some evidently rushing in their lunch hour dressed in 'office attire', middle aged daughters happily shopping with their elderly mothers heading to one of the many coffee shops, tourists With their little guide book and camera at the ready, students on bikes parking them alongside the other 50 or so in one of the many designated places. So many people, and us...young boy with brain tumour, crazy lady weaving him in and out of the crowds until we found 'the busker'.
And we always found one much to Willies delight. It was not important as to what instrument he was playing ( I'm fairly certain they were all male) or what genre of songs he sang. It was the busker experience itself Willie loved. We would stop as close as we could depending on the crowds gathered around. As people wandered off we would move in until we had front row status. Willie would watch and listen in awe. Sometimes they had unusual instruments like a selection of African wooden pipes or a homemade instrument - but mostly his favourites - a keyboard or guitar.
We would watch for an hour at least, often Willies enthusiastic clapping and beaming smile enticed the performer over for a chat -.Willie would have lots of questions about the instruments and was
delighted when the busker handed him an instrument to join in. The joy of Buskers - if you know one or are indeed one yourself be assured that for many who walk on by - there are so many touched by your music. Long live Buskers! One day we were entertained for so long we went and bought the busker a McDonalds meal...to show our appreciation (Think that day I had no cash for Willie to throw into the cap..so used my card to pay for for dinner for him instead lol)
After a ten minute warning - we would reluctantly leave and head back to the hospital...Willie ringing on his imaginary phone 'da,da,da ( this was a mix between da and der but punchy like der. Der. Der.as he 'dialled the number' )
"Jesus" he said clearly and of course in my best Jesus voice I replied.."Yes Willie?" ..."Thank you so much for sending the busker" he said sweetly. "That's ok Willie, I'm glad you enjoyed him."
I can honestly say every time, yes every time we prayed for one, wherever we were...we would meet one. In Oxford or in Newbury...sometimes Reading...EVERY time. Since Wille got his wings I think I have only come across 2 or 3 at the most over the past few years... I am more than convinced God provided them, sometimes I reflected they may have been angels in disguise. But most certainly a huge Blessing from above. Amen to that!
Wednesday, January 29, 2014
Ramblings..drills...and more.
Continuing Willie's favourite pastimes...drills were possibly number 1 on his list above all other toys. Red drills, yellow battery operated drills, small drills, drills with interchangeable accessories. Willie loved them all...and would tuck them in the top of his jogging bottoms like a gun in its holster. Ready for action whenever and wherever.
Willie would drill anything, cupboards, toys, bits of wood, and his toy workbench. One of his
favourite characters was Bob the builder and often He would call Bob up on his imaginary phone to
have a chat builder to builder (well builder to carer at the time pretending to be Bob). Willie played like any child his age but used language that was worthy of adult conversation. Anyone allowed the privilege of using his drill would have to be shown how to use it properly and safely. He would explain what each drill bit did and what you could use it for. Drilling was to be taken seriously!
One of the highlights, just weeks before he got his wings, a family friend, Ryan helped him drill some holes in our brick gate post - with a real power drill...the beaming smile as he realised one of his dreams was captured on camera...for prosperity and a reminder of Willies ability to give joy to those around him. Ryan being a real builder was definitely on Willies list of favourite people...
As you can see in the photo, Willie's concentration is on the important job in hand. Amazingly Willie
still 'looked' at what he was doing although he couldn't see at this stage. This experience was just one of the many treats God Blessed him with...in those last weeks...but more of that later - I've just skipped a few years!
Willie also loved collecting all kinds of weird and wonderful objects in his pockets. It was quite incredible how much he could get in a jogging bottom pocket. Zoe favoured the jogging bottoms as they were comfortable and easy to get on/off. Willie didn't appreciate anything tight on his body...
He would bring out a small object, maybe a bit broken off a larger toy, a stone, iPod shuffle, small car, whatever treasure he found that morning around the house ...he would delight in showing it to you before tucking it safely away again.
I am sure there were banned items smuggled into school on occasions...like his all time favourite...'the syringe' . Zoe had an abundance of these at home as they were used to administer his drugs 3 times a day. Willie loved them...they could be used to fill with water to squirt..or just nice to hold and play with - quite therapeutic. So a child carrying a medical syringe round the playground - a little bit taboo! Rubber gloves...another odd favourite..well, perceived odd by the average child but for Willie all these items were part of his daily life. When in hospital I was very naughty and would grab a handful of gloves from the boxes on the wards for him to play with. Great for blowing up like a cows udder or just to scrunch up to put in his pocket.
They would be used in role play..."Gloves on Dr MacCauley..knife and fork ready? Check...ok let's get this brain open" luckily the teddy bear didn't come to any harm...but what was normal for Willie was a world apart from most children his age.
At school the local doctors son, who was in year 6, often did 'reception duty' at lunchtime. This is where the top year at the primary school played with the youngest children at lunchtime. It worked perfectly for Willie as he got on better with older children. This amazing young man understood Willie very well. They played a game frequently where Willie would knock on the Wendy house door. 'The doctor (incredibly reminiscent of his father) would say "Come in".
Willie would walk in with a doll and give the doll to the talented junior doctor.
"What's wrong with my baby?" He asked.
"Mmm let me see" the stethoscope would be used from around his neck.
Willie would look on expectantly, with a solemn expression.
'The doctor' would shake his head from side to side.
"I'm very sorry Mr Foster-Horton there's only one thing I can do for your baby - chop it's head off"
Willie would guffaw with laughter, such a belly laugh rocking back and forward in the small Wendy house chair.
The junior doctor would giggle with him...and Willie would soon recover from his giggling, take the doll outside and knock on the door again. Willie loved to repeat things over and over if he really enjoyed them. I used to be very impressed by the doctors son with a huge heart, understanding and patience as he was happy to replay the 'doctor's surgery' game on a regular basis.
School was never Willies favourite place, as there were so many rules and regulations and an expectancy to learn. He never did learn how to read and write in the few years he was there...but the social side was important to him. He dwelled in the hearts of most of the school teachers, teaching assistants, staff, caretakers and the pupils. The pupils were brilliant at acknowledging him, always a smile and a hello..after he lost his sight they would add 'hi Willie..it's Hannah'.announcing themselves in the most natural way - ....which i found incredibly touching. Willie knew most of them by name - he did have an incredible memory for names, faces and facts..which was valuable after he went blind.
Willie knew most people by their voice, or I am convinced also by smell lol. I will enlighten you on that later. So school became a place to be endured for most of the day as the long suffering teaching assistants did their best to keep the peace. I mean this in the kindest sense..but it was no picnic trying to get him to engage in anything not involving a spade, mud, sand or water.
PE I remember being particularly painful in my short term of trying to be his teaching assistant. Zoe was very unsure about sending him to school as she worried that he may get hurt. By this time I was employed part time to help Zoe on a regular basis as proper care was £25 per hour minimum! I had been intending to work part time once Andrew was in full time education so the timing worked perfectly. I worked a couple of days a week...then the issue of school arose and it made sense that I would go into school as his one to one. Im not sure we even asked Mrs Plackett the headteacher at the time, or just announced it.
It had taken a few weeks for me to get my 'Willie on his own' badge. mainly obtained by kidnapping him whilst Zoe protested strongly.The first time I insisted (mainly to give her a rest), I promised to phone several times whilst out. As each time he came back safe and smiling I gradually increased the hours until I was full qualified and trusted. For those who knew me then and now, you like I, marvel at the fact I could keep him safe. I am not well known for my focus and yet with Willie it did become very natural.
There was one day i recall that went horribly wrong. Willie needed the toilet whilst we were sitting sharing a plate of chips in a cafe (taboo food eek) when he announced he needed a wee. Quickly. So I threw my bottle of water along with my phone in the pushchair hood. Placed Willie quickly in the pushchair, stuffed a handful of chips in my mouth to munch on the way and took off at my fastest pace through the shopping center to the public toilets. I knew I had a time limit of 1 minute 3 seconds to get there before it was too late. Fortunately it wasn't too far as i couldn't run that fast.
I went to the last cubicle in the row as I wanted to leave the pushchair with all our belongings as close as possible without it being in the way....no spacious mother and child toilets in those days...I grabbed Willie out of the pushchair pushed him into the toilet whilst practically pulling his sweat pants down at the same time. he shrieked as his head hit the hard plastic fold up child seat exactly at his head height. B*****..yes that was my exact thought and I apologise to anyone who thinks I would never swear.
I tried to placate him before the initial shriek transformed into a wailing session - or worse..that he had caused damage to his head that would be catastrophic. I feared already having to confess to Zoe. There were never any secrets as Willie forgot nothing and would retell our adventures intricately to his mum on our return. I managed to keep him calm and there were no more tears. After he had relieved himself I lifted him back into the pushchair..watching him like a hawk..was he going into shock..it was a sudden bang to the head..was he turning blue..and as these investigations were going on I nonchantly grabbed his bottle of juice. It was in a babys bottle with the plastic top on. I didn't pay any attention to it as I held it over his head..not taking my eyes off him for a second..I took the lid off without noticing it had filled up with blackcurrant juice...I only realised as it cascaded all over his head and down his checked shirt and jogging bottoms in a wet sticky mess.
I held my breath...waiting for the inevitable reaction of hysterical crying...but nothing.. I looked him in the eye with the best 'I'm so sorry look' one can give under such circumstances. He looked up at me without one tear and said quite simply 'Oh F***'
That broke the moment and we both laughed like drains..me with complete and utter relief that he was neither unconscious or screaming..and Willie..because he did have a great sense of humour even when bruised and drenched. He never swore so it was a complete surprise he even knew the word and the context in which to use it.
I felt that I should pre-warn Zoe before I returned..give her a few minutes to absorb the information before I saw her...so once I had changed him into the spare clothes from his rucksack I reached for my phone. It had drowned. The waterproof hood meant there was a big pool of water - leaked from my water bottle. In my rush I hadn't screwed the lid on properly.
Thankfully that was my worst day out with him..and Zoe forgave me so I could continue journeying with my little buddy.
Willie would drill anything, cupboards, toys, bits of wood, and his toy workbench. One of his
favourite characters was Bob the builder and often He would call Bob up on his imaginary phone to
have a chat builder to builder (well builder to carer at the time pretending to be Bob). Willie played like any child his age but used language that was worthy of adult conversation. Anyone allowed the privilege of using his drill would have to be shown how to use it properly and safely. He would explain what each drill bit did and what you could use it for. Drilling was to be taken seriously!
One of the highlights, just weeks before he got his wings, a family friend, Ryan helped him drill some holes in our brick gate post - with a real power drill...the beaming smile as he realised one of his dreams was captured on camera...for prosperity and a reminder of Willies ability to give joy to those around him. Ryan being a real builder was definitely on Willies list of favourite people...
As you can see in the photo, Willie's concentration is on the important job in hand. Amazingly Willie
still 'looked' at what he was doing although he couldn't see at this stage. This experience was just one of the many treats God Blessed him with...in those last weeks...but more of that later - I've just skipped a few years!
Willie also loved collecting all kinds of weird and wonderful objects in his pockets. It was quite incredible how much he could get in a jogging bottom pocket. Zoe favoured the jogging bottoms as they were comfortable and easy to get on/off. Willie didn't appreciate anything tight on his body...
He would bring out a small object, maybe a bit broken off a larger toy, a stone, iPod shuffle, small car, whatever treasure he found that morning around the house ...he would delight in showing it to you before tucking it safely away again.
I am sure there were banned items smuggled into school on occasions...like his all time favourite...'the syringe' . Zoe had an abundance of these at home as they were used to administer his drugs 3 times a day. Willie loved them...they could be used to fill with water to squirt..or just nice to hold and play with - quite therapeutic. So a child carrying a medical syringe round the playground - a little bit taboo! Rubber gloves...another odd favourite..well, perceived odd by the average child but for Willie all these items were part of his daily life. When in hospital I was very naughty and would grab a handful of gloves from the boxes on the wards for him to play with. Great for blowing up like a cows udder or just to scrunch up to put in his pocket.
They would be used in role play..."Gloves on Dr MacCauley..knife and fork ready? Check...ok let's get this brain open" luckily the teddy bear didn't come to any harm...but what was normal for Willie was a world apart from most children his age.
At school the local doctors son, who was in year 6, often did 'reception duty' at lunchtime. This is where the top year at the primary school played with the youngest children at lunchtime. It worked perfectly for Willie as he got on better with older children. This amazing young man understood Willie very well. They played a game frequently where Willie would knock on the Wendy house door. 'The doctor (incredibly reminiscent of his father) would say "Come in".
Willie would walk in with a doll and give the doll to the talented junior doctor.
"What's wrong with my baby?" He asked.
"Mmm let me see" the stethoscope would be used from around his neck.
Willie would look on expectantly, with a solemn expression.
'The doctor' would shake his head from side to side.
"I'm very sorry Mr Foster-Horton there's only one thing I can do for your baby - chop it's head off"
Willie would guffaw with laughter, such a belly laugh rocking back and forward in the small Wendy house chair.
The junior doctor would giggle with him...and Willie would soon recover from his giggling, take the doll outside and knock on the door again. Willie loved to repeat things over and over if he really enjoyed them. I used to be very impressed by the doctors son with a huge heart, understanding and patience as he was happy to replay the 'doctor's surgery' game on a regular basis.
School was never Willies favourite place, as there were so many rules and regulations and an expectancy to learn. He never did learn how to read and write in the few years he was there...but the social side was important to him. He dwelled in the hearts of most of the school teachers, teaching assistants, staff, caretakers and the pupils. The pupils were brilliant at acknowledging him, always a smile and a hello..after he lost his sight they would add 'hi Willie..it's Hannah'.announcing themselves in the most natural way - ....which i found incredibly touching. Willie knew most of them by name - he did have an incredible memory for names, faces and facts..which was valuable after he went blind.
Willie knew most people by their voice, or I am convinced also by smell lol. I will enlighten you on that later. So school became a place to be endured for most of the day as the long suffering teaching assistants did their best to keep the peace. I mean this in the kindest sense..but it was no picnic trying to get him to engage in anything not involving a spade, mud, sand or water.
PE I remember being particularly painful in my short term of trying to be his teaching assistant. Zoe was very unsure about sending him to school as she worried that he may get hurt. By this time I was employed part time to help Zoe on a regular basis as proper care was £25 per hour minimum! I had been intending to work part time once Andrew was in full time education so the timing worked perfectly. I worked a couple of days a week...then the issue of school arose and it made sense that I would go into school as his one to one. Im not sure we even asked Mrs Plackett the headteacher at the time, or just announced it.
It had taken a few weeks for me to get my 'Willie on his own' badge. mainly obtained by kidnapping him whilst Zoe protested strongly.The first time I insisted (mainly to give her a rest), I promised to phone several times whilst out. As each time he came back safe and smiling I gradually increased the hours until I was full qualified and trusted. For those who knew me then and now, you like I, marvel at the fact I could keep him safe. I am not well known for my focus and yet with Willie it did become very natural.
There was one day i recall that went horribly wrong. Willie needed the toilet whilst we were sitting sharing a plate of chips in a cafe (taboo food eek) when he announced he needed a wee. Quickly. So I threw my bottle of water along with my phone in the pushchair hood. Placed Willie quickly in the pushchair, stuffed a handful of chips in my mouth to munch on the way and took off at my fastest pace through the shopping center to the public toilets. I knew I had a time limit of 1 minute 3 seconds to get there before it was too late. Fortunately it wasn't too far as i couldn't run that fast.
I went to the last cubicle in the row as I wanted to leave the pushchair with all our belongings as close as possible without it being in the way....no spacious mother and child toilets in those days...I grabbed Willie out of the pushchair pushed him into the toilet whilst practically pulling his sweat pants down at the same time. he shrieked as his head hit the hard plastic fold up child seat exactly at his head height. B*****..yes that was my exact thought and I apologise to anyone who thinks I would never swear.
I tried to placate him before the initial shriek transformed into a wailing session - or worse..that he had caused damage to his head that would be catastrophic. I feared already having to confess to Zoe. There were never any secrets as Willie forgot nothing and would retell our adventures intricately to his mum on our return. I managed to keep him calm and there were no more tears. After he had relieved himself I lifted him back into the pushchair..watching him like a hawk..was he going into shock..it was a sudden bang to the head..was he turning blue..and as these investigations were going on I nonchantly grabbed his bottle of juice. It was in a babys bottle with the plastic top on. I didn't pay any attention to it as I held it over his head..not taking my eyes off him for a second..I took the lid off without noticing it had filled up with blackcurrant juice...I only realised as it cascaded all over his head and down his checked shirt and jogging bottoms in a wet sticky mess.
I held my breath...waiting for the inevitable reaction of hysterical crying...but nothing.. I looked him in the eye with the best 'I'm so sorry look' one can give under such circumstances. He looked up at me without one tear and said quite simply 'Oh F***'
That broke the moment and we both laughed like drains..me with complete and utter relief that he was neither unconscious or screaming..and Willie..because he did have a great sense of humour even when bruised and drenched. He never swore so it was a complete surprise he even knew the word and the context in which to use it.
I felt that I should pre-warn Zoe before I returned..give her a few minutes to absorb the information before I saw her...so once I had changed him into the spare clothes from his rucksack I reached for my phone. It had drowned. The waterproof hood meant there was a big pool of water - leaked from my water bottle. In my rush I hadn't screwed the lid on properly.
Thankfully that was my worst day out with him..and Zoe forgave me so I could continue journeying with my little buddy.
Saturday, January 25, 2014
'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...
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...
Sunday, January 19, 2014
'What is normal?'
I have been pondering all day whether or not to deviate for a blog to share one of the many lessons I learnt on this journey. I have called the blog 'Willies journey of faith' - and Willies faith becomes increasingly evident as time passes. This journey we walked together also increased my own faith tenfold.
I would encourage any of you who feel nudged to step out of your comfort zone...for often it is in these 'unlikely' places that we can be truly Blessed. If we walk in our usual footsteps secure in what
and whom we know..we may miss out on insights that are truly breathtaking.
The craniofacial ward at the Radcliffe Infirmary aka Leopold Ward was a world like no other. It is a specialised ward for anything from a hare lip operation required to the most disfigured face you may
ever encounter. Thankfully the majority of us would never be aware of its existence because our children were born 'normal' . But what is indeed normal?
I'm not trying to open a can of worms or even give an opinion - political or otherwise...but witnessing
the abnormalities on these tiny infants, what struck me more than anything was the fact that without any doubt the parents loved these children...and definitely by the wistful look on their faces saw them as beyond beautiful. Looking adoringly at them were young teenage mums cuddling their babies and
nurturing them, looking sad when they were going off for yet another operation, and sitting unmoving, watching intensely as their children returned to their beds/cots recovering with bandages wrapped round their small heads, feeding tubes up their noses. Unwavering dedication and pure love.
These were not the babies they had dreamed of giving birth to, they had not anticipated spending weeks or months on Leopold ward in Oxford..maybe miles and miles from home. But this was where
the top specialists hung out...incredibly gifted, talented and knowledgeable - recently I saw a programme on the Children's hospital at the John Radcliffe which replaced this hospital..with some of the surgeons that had operated on Willie.
For these parents it was a safe haven, the doctors and nurses were all outstanding in their humility, kindness and professionalism. I marvelled at both the inpatients and the staff. A world removed from
normal life but a world that made the very best of a very difficult situation. I salute anyone going through the pain of watching their children undergo sometimes extensive surgery and I salute the staff that make that experience the best it possibly can be.
There was a three year old girl in the bed opposite Willie on my very first visit. I will be honest - I kept looking, watching I couldn't help myself. I watched the parents motivating her, cuddling her, fussing around her, the love shining like a neon light, almost blinding.
Bella (this was not her real name as I do not feel it is respectful for me to write about anyone without permission) was an identical twin that had been born with her brain coming out of her skull. She had
undergone numerous operations since birth, including making a skull and giving her a forehead, making her a new nose as they had stretched her skin to the top of her scalp. Her scalp was large and protruding and her hairline started halfway back across her head. They had done the very best they could to model her face to be 'as normal' as it could be.
Bella was also limited in her movements and couldn't walk or talk and therefore was learning sign language. I'm ashamed to say I did stare again and again just trying to fathom what they had done, to
give this little girl a chance of a life to be enjoyed rather than endured. Her mum and dad were intent on making her feel loved and cherished and were doing an amazing job.
On one visit I was making a cup of tea in the parents kitchen,which was an incredibly small space. It
had a fridge, kettle, a few cupboards and a microwave. There was only room for a couple of people at a time. Bella's mum and dad were waiting by the door, her mum holding Bella in her arms. I smiled and stepped outside whilst waiting for the kettle to boil. Instead of going in they stopped for a chat...we had got acquainted in passing on the ward, and so chatted easily and comfortably.
As I stood there Bella put her arms out towards me, I looked questioningly at her mum to see if it was ok for me to take her. Her mum smiled reassuringly and so I took her gently into my arms. She was quite tall for a three year old but only slight so easy to hold. I was extra careful as I had no idea if she had any sensitive areas on her little frame. I smiled at her and she very gently reached her little hand
out and touched my hair with the greatest sensitivity I had ever felt from a child..or from anyone before - it was incredible....my heart melted instantly and her little face was transformed into incredible beauty. It was as if her beautiful heart was shining so brightly it lit up her whole being.
No wonder her parents had been looking at her with that adoring look, Bella was adorable. As I felt this overwhelming love for this gorgeous little girl I felt God really speak to my heart..."and this my
child is how I see you". Awesome. A moment in time captured in a critical illness hospital ward. A gem to be treasured forever. God sees us by our hearts, so if our hearts are full of beauty then we to are beautiful in His sight. A challenge to me there and then and a new found confidence. Never again would I worry about my appearance, my extra chins or spare tyres. It did not matter. This beautiful
child that I have deliberately nicknamed Bella had transformed my life in that one cuddle. Profound moment for me. I have often reflected on it...especially if I am concerned about my appearance at any time, I do remember that it's not important , what is important is to pray that my heart will be full of love, Gods love to share with others then they will see me as a God intended me to be...beautiful from the inside out.
Many years ago in our church there was a 7 year old brain damaged boy being passed along a line of people, mum,dad, brother, sister and back again. I remember seeing love like never before as they all
in turn cuddled and cherished young James. I remember thinking that we can learn so much by young people/anyone that is disabled mentally or physically because often the love surrounding them is so prominent and tangible you can see it almost in 3D. I have watched James grow up in body although his mind has remained the same and witnessed the amazing care and dedication by his awesome family. I often reflect on whether his brother and sister would have such a caring outlook on life if James had been normal. In fairness with their parents being so lovely I am sure they would have been. But I'm sure nurturing James gave them a bigger insight and empathy to those less fortunate than themselves.
So I go back to my original question...what is normal? Where is the line drawn, we can learn sooo much from such sad circumstance if we can accept everyone as 'normal' if we look deep into their
hearts we can find treasure beyond anything we have experienced before.
I'm not glad these babies are born this way, it is heartbreaking for the families, but I think we underestimate how much we can learn from them.
We had a stillborn baby boy 19 years ago with Edwards Syndrome, an extra chromosome 18...classified as incompatible with life. Our eldest son was five and second son three at the time. They both came to say goodbye to their baby brother. I was a bit worried that they may be a bit frightened by his appearance as he did not look 'normal' . I needn't have been concerned as a few weeks later we were in the car waiting for a lady to put her baby boy in his car seat - so we could take her parking space. As we waited I said to Simon our eldest, sitting in the front with me.."Aww..look son what a beautiful baby boy" ...to which he replied "Yes but not as beautiful as my Ben...no-one is as beautiful as him". Wow out of the mouth of babes.
I have no idea what happened to Bella, I only saw her once again, but I am certain she continued to Bless so many - as I know James has, who is now 23 years old. I have no idea why or how these things happen, but I'm grateful that I trust in a God that does and who sees the bigger picture of which I am only a very small part.
I would encourage any of you who feel nudged to step out of your comfort zone...for often it is in these 'unlikely' places that we can be truly Blessed. If we walk in our usual footsteps secure in what
and whom we know..we may miss out on insights that are truly breathtaking.
The craniofacial ward at the Radcliffe Infirmary aka Leopold Ward was a world like no other. It is a specialised ward for anything from a hare lip operation required to the most disfigured face you may
ever encounter. Thankfully the majority of us would never be aware of its existence because our children were born 'normal' . But what is indeed normal?
I'm not trying to open a can of worms or even give an opinion - political or otherwise...but witnessing
the abnormalities on these tiny infants, what struck me more than anything was the fact that without any doubt the parents loved these children...and definitely by the wistful look on their faces saw them as beyond beautiful. Looking adoringly at them were young teenage mums cuddling their babies and
nurturing them, looking sad when they were going off for yet another operation, and sitting unmoving, watching intensely as their children returned to their beds/cots recovering with bandages wrapped round their small heads, feeding tubes up their noses. Unwavering dedication and pure love.
These were not the babies they had dreamed of giving birth to, they had not anticipated spending weeks or months on Leopold ward in Oxford..maybe miles and miles from home. But this was where
the top specialists hung out...incredibly gifted, talented and knowledgeable - recently I saw a programme on the Children's hospital at the John Radcliffe which replaced this hospital..with some of the surgeons that had operated on Willie.
For these parents it was a safe haven, the doctors and nurses were all outstanding in their humility, kindness and professionalism. I marvelled at both the inpatients and the staff. A world removed from
normal life but a world that made the very best of a very difficult situation. I salute anyone going through the pain of watching their children undergo sometimes extensive surgery and I salute the staff that make that experience the best it possibly can be.
There was a three year old girl in the bed opposite Willie on my very first visit. I will be honest - I kept looking, watching I couldn't help myself. I watched the parents motivating her, cuddling her, fussing around her, the love shining like a neon light, almost blinding.
Bella (this was not her real name as I do not feel it is respectful for me to write about anyone without permission) was an identical twin that had been born with her brain coming out of her skull. She had
undergone numerous operations since birth, including making a skull and giving her a forehead, making her a new nose as they had stretched her skin to the top of her scalp. Her scalp was large and protruding and her hairline started halfway back across her head. They had done the very best they could to model her face to be 'as normal' as it could be.
Bella was also limited in her movements and couldn't walk or talk and therefore was learning sign language. I'm ashamed to say I did stare again and again just trying to fathom what they had done, to
give this little girl a chance of a life to be enjoyed rather than endured. Her mum and dad were intent on making her feel loved and cherished and were doing an amazing job.
On one visit I was making a cup of tea in the parents kitchen,which was an incredibly small space. It
had a fridge, kettle, a few cupboards and a microwave. There was only room for a couple of people at a time. Bella's mum and dad were waiting by the door, her mum holding Bella in her arms. I smiled and stepped outside whilst waiting for the kettle to boil. Instead of going in they stopped for a chat...we had got acquainted in passing on the ward, and so chatted easily and comfortably.
As I stood there Bella put her arms out towards me, I looked questioningly at her mum to see if it was ok for me to take her. Her mum smiled reassuringly and so I took her gently into my arms. She was quite tall for a three year old but only slight so easy to hold. I was extra careful as I had no idea if she had any sensitive areas on her little frame. I smiled at her and she very gently reached her little hand
out and touched my hair with the greatest sensitivity I had ever felt from a child..or from anyone before - it was incredible....my heart melted instantly and her little face was transformed into incredible beauty. It was as if her beautiful heart was shining so brightly it lit up her whole being.
No wonder her parents had been looking at her with that adoring look, Bella was adorable. As I felt this overwhelming love for this gorgeous little girl I felt God really speak to my heart..."and this my
child is how I see you". Awesome. A moment in time captured in a critical illness hospital ward. A gem to be treasured forever. God sees us by our hearts, so if our hearts are full of beauty then we to are beautiful in His sight. A challenge to me there and then and a new found confidence. Never again would I worry about my appearance, my extra chins or spare tyres. It did not matter. This beautiful
child that I have deliberately nicknamed Bella had transformed my life in that one cuddle. Profound moment for me. I have often reflected on it...especially if I am concerned about my appearance at any time, I do remember that it's not important , what is important is to pray that my heart will be full of love, Gods love to share with others then they will see me as a God intended me to be...beautiful from the inside out.
Many years ago in our church there was a 7 year old brain damaged boy being passed along a line of people, mum,dad, brother, sister and back again. I remember seeing love like never before as they all
in turn cuddled and cherished young James. I remember thinking that we can learn so much by young people/anyone that is disabled mentally or physically because often the love surrounding them is so prominent and tangible you can see it almost in 3D. I have watched James grow up in body although his mind has remained the same and witnessed the amazing care and dedication by his awesome family. I often reflect on whether his brother and sister would have such a caring outlook on life if James had been normal. In fairness with their parents being so lovely I am sure they would have been. But I'm sure nurturing James gave them a bigger insight and empathy to those less fortunate than themselves.
So I go back to my original question...what is normal? Where is the line drawn, we can learn sooo much from such sad circumstance if we can accept everyone as 'normal' if we look deep into their
hearts we can find treasure beyond anything we have experienced before.
I'm not glad these babies are born this way, it is heartbreaking for the families, but I think we underestimate how much we can learn from them.
We had a stillborn baby boy 19 years ago with Edwards Syndrome, an extra chromosome 18...classified as incompatible with life. Our eldest son was five and second son three at the time. They both came to say goodbye to their baby brother. I was a bit worried that they may be a bit frightened by his appearance as he did not look 'normal' . I needn't have been concerned as a few weeks later we were in the car waiting for a lady to put her baby boy in his car seat - so we could take her parking space. As we waited I said to Simon our eldest, sitting in the front with me.."Aww..look son what a beautiful baby boy" ...to which he replied "Yes but not as beautiful as my Ben...no-one is as beautiful as him". Wow out of the mouth of babes.
I have no idea what happened to Bella, I only saw her once again, but I am certain she continued to Bless so many - as I know James has, who is now 23 years old. I have no idea why or how these things happen, but I'm grateful that I trust in a God that does and who sees the bigger picture of which I am only a very small part.
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