Showing posts with label pads. Show all posts
Showing posts with label pads. Show all posts

Friday, September 16, 2022

Jehovah-Rapha

While Pads was recovering from waking at 2 for two ours (he was reading the book by Roger Carswell, 'Why Me?'), we were having family worship in Exodus 15. I dont think I really dealt all that well with the passage, so, missing church to sit with Pads, went looking for a good exposition, in particular, about the name of God that is used in that passage, Jehovah-Rapha - 'The LORD that heals you'. I checked Calvin and Matthew Henry, but they dont pick up on it in my sources. Something like 'got questions' shows more detail... www.gotquestions.org/Jehovah-Rapha.html

Saturday, December 19, 2015

18

Padi would have been 18 today so we were delighted that Bluebells had space for us. It seems a fitting place to be. We always looked forward to our stays here. The games room and pool are favourites. There's acres of space. Being in the South East brings us within 40 minutes of Ally's family, so they were able to visit for a turkey dinner on Thursday evening. This was especially opportune because her father's not able to travel as far as Cardiff at the moment, for health reseaons. 
Padi has a page in the Bluebells book of remembrance, amongst the 100's of so-called 'butterfly children'. The photo provides a point of reflection, dating back to our first trip here when the kids were considerably smaller. Life moves on, more or less comfortably. We have mused on the progress and growing-up of his siblings and especially his friends, since meeting the latter is less regular. Ally resumed work at the Velindre cancer centre, which occasionally throws up some predictably difficult moments, no matter how supportive the staff are. We recently moved house too, escaping something of a debt trap. Our new old place, built in the 1890's, is very handy for church and suits us well. Padi did not want to leave Heathwood Road but the time was right; providence expedited our purchase of Donald Street, just a few doors up from the house where Dr Martyn Lloyd-Jones was born. Pads would be pleased we made it to Bluebells anyway. Ally was browsing the unique collection of bereavement-related resources yesterday. The charity, http://www.sebastiansactiontrust.org , doesn't stand still: they've extended the property and tamed the large garden. They're even in the final stages of approval for another site: Bluebells 2. There is huge demand for these kinds of services
We like short breaks. Yesterday, leaving the kids in the pool, Ally and I took a brisk walk to North Waltham where the idea hatched of visiting a national trust property. Needless to say, the kids were happy to let us go without them. The Vyne is a splendid Tudor mansion, just the other side of Basingstoke from Bluebells. The site began its use as a church and, although quite small, provides a major claim to fame through the stained glass currently being restored. Another notable feature is the 100 guinea oak. You can read how it was named on the Vyne gardens blog: https://vynegardensnt.wordpress.com/2011/08/15/a-grand-old-friend/
Various scraps of religious significance were observed, with Christmas just around the corner. The National Trust always likes to tap into festivals and their relevance for the particular site's history: the restoration of Christmas post-puritans was noted with some glee in one Trust historian's blurb. We flinch at the violence dished out upon celebrants back then. Our view holds that the Lord's Day takes precedence over any other 'day', but that there is worth in noting and giving special attention annually to the glorious divine interventions of the incarnation and crucifixion of our Lord Jesus Christ. This is only ever done in a measured way, for example, the special scripture readings we follow:
Principally, these seasons are useful as opportunities for the gospel: we travel back later to the carol service. Catch it online if you can: http://youtu.be/H7WM4cm4VmY
Previous trips to Bluebells in 
February 2013 Was a much shorter, more subdued trip - Pads hardly ventured out of his bed. http://mrmrj.blogspot.co.uk/2013/02/back-from-bluebells-again.html 

Tuesday, July 14, 2015

Pen-y-Fan: The Good News

We live not far from the Brecon Beacons (30 minutes drive north). They've been in the news lately with the inquest into the deaths of three soldiers. I'm on leave and took a moment to read Ceri Jackson's thoughtful and comprehensive post about it. http://www.bbc.co.uk/news/uk-wales-33506589 
Two years ago, Padi fell asleep in Christ. His own brush with Pen-y-Fan's severe weather has passed into family and church folklore, it was a significant theme of the funeral sermon (View on YouTube: http://youtu.be/ypIdA9b6WDk 
I shudder to think of how close to real harm we were. As can be seen from the photo, Padi was warmly wrapped and happy. As the weather came on and the situation became quite scary, I hurried Padi off to the side of the summit to relative shelter in order to change into his wellies (sorry but we were broke) and raincoat. It was as we hurried off the summit that Pads broke down in anguish and pain from the hail in his face and started reciting Psalm 46 (he'd already done that when challenged by the steep climb onto Corn Du). Our route down took us past the Tommy Jones memorial and, with the pelting rain at our backs, we descended to the safety of the Cwm and then on towards Login and somewhere to camp for the night (amongst a large group of curious and sympathetic Guides). The last 10 metres of the mountain retained a foot of snow for days after. Pen-y-Fan is really a tiny hillock in global terms, not even high enough to claim Munro status (as per the 3000 ft Scottish hill classification). But truly the weather varies in these hills and needless tragic loss of life is a regular occurrence. As hazardous as all this may have seemed, little did I know that the far more deadly threat was almost certainly already highly active within his body. This blog has not really charted the onset and diagnosis of Padi's illness, but it still amazes me that it was only a couple of months after the Pen-y-Fan adventure that he began to speak of double-vision and strange neck pains. I am so glad to have chosen him for the first of my 'quality time with dad' trips. I cannot pass the opportunity to point out that an even more deadly potential is virulently at work in each one of us as we skip or trip through the moments of our life, and that is the principle of sin. This curse has only one cure, the Gospel, the good news of God's Son coming to earth in a way that made it possible for him to be the Lamb of God that takes away the sin of the World. The World, of which we are all part, despised, rejected and slew him so that our death is swallowed up in the victory of his death and resurrection. This is the mighty foundation that enables us to meet and rebut the sorest grief. 
But the tipping point for this post, apart from the other aspects mentioned already, was possibly the recent message by Jeff Gilbert (listen here: http://tabernaclecardiff.org/sermons/2015/07/12/god-in-his-church/ ). He spoke of the importance of knowing the truths we read in the Bible, but the vital importance of experiencing them too. In a familiar analogy, the Bible and its doctrines are like the map. But, according to the text, in Ephesians 3:19-21 we should know the unknowable. We must ascend, using the map, experiencing what the map has only been able to describe in two dimensions. Some religions claim that God is too high and holy for us sinners to really know. But it is one of the glories of Christianity that robustly proclaims that not only is knowing God possible, it is absolutely essential for time and eternity, for life and death. The Lord Jesus Christ died to secure this for us. Anything that stops short of securing intimacy with The Eternal Lord God Almighty Creator, Sustainer and Judge of heaven and earth is vanity, a mere playing at spirituality, however sincere, that is cut off from the Source of life and health and peace. The difference between mere religion and true religion is vibrantly depicted in the book More Than Notion, recently recommended again by Pastor Dewi. In a remarkable effort, Ally has read it into a microphone if you would like to hear it. The chapters can be taken one at a time from this link 
Or you can download the entire thing in a single zip file from this link:

 Other posts about Pen-y-Fan: http://mrmrj.blogspot.co.uk/search?q=Pen-y-fan

Monday, July 21, 2014

1st Anniversary


We were delighted with the way that the Cofio Padi Fellowship Evening went. Many had given their apologies so we did not know what to expect in terms of turnout but more than 80 gathered in the upper hall to share and enjoy memories. I got everyone's attention by playing the video of 'what Padi did with Appledore crabs', closely followed and sharply contrasted with the interview he gave to promote LATCH just weeks before he passed into glory. LATCH paid for the services of Ben Ewart-Dean (who gave me permission to host the video here) to shoot and produce a promo and we were invited to 'Premiere' at Penarth Pier Pavilion later in 2013.
We needed to start the speeches by 6:30pm in order for Jane to get away but we were running late so I did not quite get to record the first contribution by Ally. All the contributions were deeply impressive. You can listen to the recording from http://tabernaclecardiff.org/sermons/2014/07/19/cofiopadi-fellowship-evening/
Saturday night actually felt more like the first anniversary, since Pads passed away in the early hours of Sunday. Later on we sung 'Sovereign Ruler of the Skies', one of his chosen funeral hymns. If this was at all upsetting, the pastor's superb sermon on 'There is a river' from Padi's psalm (46) brought to us the pure Source of our blessed assurance.
Today's been calm. Kids are on holidays and I've got leave for the conference. Moli's been feeling dizzy and needs to complete her Welsh Baccalaureate work so a trip to the local Forest tea room suited well. We then popped down to the grave: blistering sun reminiscent of the funeral day's weather.
With apologies to everyone else, it's still got the best stone in the park. That verse proclaims the reality of our conquest over death and the grave through our Saviour, whose rising again points all of us to the skies. "Unto you therefore which believe he is precious" 1 Peter 2:7

Sunday, December 22, 2013

Happy Birthday

We approached Padi's birthday with some trepidation but the prospect was made easier by the memorial service at Glan Taf. This solved the awkwardness around what we would actually do when we might have spent some time looking at each other wishing we could bid Pads a happy birthday and enjoy opening presents with him.
Pads was amazed to get a new DS in December 2012
The CofioPadi group, who have raised over £4000 by now, were instrumental in organising a very sensitive and emotional tribute to Pads. Around ten of his friends lined up to read their own tribute (I encouraged them to transcribe and share through their facebook page but no sign of that yet). Ally also had a chance to say something. She noted that many have said what a 'saint' Padi was, although those closer to him could all recall moments when that picture did not quite fit. When he was small and out shopping with mum, Pads vanished from sight. Two feet sticking out from under some baskets gave him away. There he was, gorging a large chocolate Santa, cheeks bulging. Fast forward to early last year and this event came back to haunt his conscience. Newly awakened to the holiness of God, he knew that this seemingly trivial sin was offensive to his Maker. One theft makes one a thief. One lie makes one a liar, just as one murder makes one a murderer. You may be forgiven by the person you stole from or lied to/about. But what can you do about your conscience? What do you do with guilt? Some try and drown it or tell another human about it. Nothing can really erase it. The reason for that is that the essence of sin is that it is against the Living God who sees all and will hold you to account. Be sure that God takes you much more seriously than you take him. But God is gracious and affords you a Way, a Truth, a Life, by which you can know peace instead of the raging of conscience, no matter what you have done, we can confess it to Him and know the peace of God which passes all understanding. That is grace. How thankful we should be that the Second Person of the Trinity came to live in accordance with his own laws, becoming the spotless Lamb of God qualifying him to bear the due punishment of our sins on Calvary's cross.
After Ally, Pastor Dewi Higham read a few verses from Padi's Psalm (46) in Welsh and prayed. It was a lovely service - great to share it with the whole of Year 11 and others, such as Miss Evans, the Head from Mynydd Bychan primary school and Padi's nurse.
After the service, we went to a garden where everyone wrote on a balloon and released it into a clear blue sky. You can watch a video of this on YouTube.  After that, we were invited back to a comfortable room where we had time to relax and chat. This was important for the children especially, many of whom were deeply affected. It was characteristic of the outstanding way that Glan Taf have looked after the children throughout Padi's illness, his passing and beyond.
It was time to move on. Ally and I visited the grave where roses placed by one of Padi's friends were still in good shape. We co-incided with several other visitors that day and had so many messages of support - the house resembles a florist again! Ally and I 'chilled' for the afternoon - Padi would have approved of our visit to the hot-tub. He would have also liked to join us for the second installment of 'The Hobbit', but that was not to be. Padi was excited at the thought of watching these films, being something of a Tolkein buff he enjoyed the first one last Christmas. However, previously the news had leaked that the three films were completed but would be released annually. This grated somewhat as rather grasping of Hollywood and yet it was another poignant illustration of how Padi had to come to terms with his term.
We reached the end of a day that we'd been dreading, grateful to God and all our comforters for another good day. 

Saturday, November 23, 2013

Grave stone

Padi's memorial stoneWe were hoping that the stone would be installed before Padi's birthday, but it was a surprise to hear from
Ash Memorials yesterday that the stone had been put into its place.
It was a lovely day to visit Pantmawr, Ally spotted the stone a way off. We know that mistakes happen with these things so were relieved to see that every detail was correct. It's not clear from this picture, but there is a full stop after the 2013 date. In the planning, I quite thought that it would be good if the bible text was along the bottom but of course this would mean it could be obscured by flowers laid at the foot of the stone. However, with the text immediately following that full stop, 'But now', it indicates, to my mind at least, that there is more to come. Every time we gaze upon the grave or call it to mind the word 'now' will speak back to us of Padi's enduring state of glory. Death is not the end, and 'in Christ Jesus' there is wonderful peace, hope, joy and glory. The last two lines speak of the fact that we are all sinners, willingly and willfully alienated from our Maker, yet with the blood of Christ atoning for us, we gain admission into union and communion with God forever. We are made nigh in this life, but how much more after death! That last line, 'made nigh' is no more true of anyone than Padi himself, in the immediate presence of God. This is explained wonderfully by Dr Martyn Lloyd Jones in his exposition of Ephesians 2:13, accessible from this link to the Martyn Lloyd-Jones Recordings Trust.
I don't think I'd appreciated what a memorial stone was really for before this one. It seems a bit odd, in a sortof morbid kind of way, but I really like it and would be quite happy to hang up a picture of it or use it as my computer 'wallpaper'. I'll probably have to settle for a plaque with the verse on it. I have to admit that we were trying to avoid using too many words as every additional letter is more money. Other stones have pictures of the deceased, icons of their football club, long lists of doting relatives' names or entire poem verses about missing the person, all of which must cost a small fortune! That is their choice, of course, and I respect it as such. But the words we have are so simple and profound, I really think this is one of the best grave stones I have ever seen. We believe in the resurrection of the body and, if he's not too taken up with what is taking place, if he can spare a glance at the inscription as he ascends, he will approve and find it a pleasing sight.

Monday, November 18, 2013

Radio programme

Yesterday at 5pm, a programme was broadcast by BBC Radio Wales featuring our recent ordeal.
We were asked to contribute towards a human interest programme by the North Wales media company Chwarel. They gave us a mic and asked is to record into it whenever we felt able to, so it was a very non- invasive method. We are grateful to Sioned and others at Chwarel for their sensitive handling of all the footage.
I don't think it is available outside the UK so you can access it from this link: Mike's copy of 'A Miracle for Paddi'

Saturday, November 2, 2013

Raw footage

It is with some trepidation that I share the entire video interview which Padi gave for the LATCH film. Only a couple of moments were shaved off, but these extra bits give a real insight into his suffering and paint an even stronger contrast with the 'lighter moments' in the clip.
Ben, the film-maker, kindly supplied us with the uncut footage via the video-sharing site called Vimeo. The interview was conducted by another member of the Brain Tumour Support Group.

Padi LATCH interview with permission: Ben Ewart-Dean (education).

Saturday, October 26, 2013

BTSG film premiere event in Penarth Pier Pavilion

We had been looking forward to a viewing of the film made earlier this year by Pads and his Brain Tumour Support Group. LATCH received a grant from Children in Need and this was used to pay for several sessions with a film-maker. Padi was too ill to travel to the first two as these happened in Penarth but he did shake himself down and managed to get out to the final shoot over at the Heath, complete with syringe-driver and shades (because of his double vision). If you can saunter from a wheelchair, that's how he arrived - hailing his friends with a big wave! This was typical of the way he regularly defied our most extreme expectations of how someone as ill as he was would behave. The film is still not opened up to public access yet - when it is I will post up a link. We'd had a preview which was just as well because seeing him on the big screen was pretty challenging. The way he talks about his illness is spell-binding. It is a side of him that, as carers and parents, we had not seen very much of.
I took the afternoon off work and the children finished school early in order to attend the event which was staged at Penarth Pier Pavilion (link to their public facebook page). This iconic building is in the latter stages of remarkable and much needed major renovation. We were pretty inspired by the community-spirited vision for it's ongoing use. For example, Room 617, the observatory, is dedicated to Guy Gibson, CO of 617 Squadron, as a meeting place for sufferers of Post-Traumatic Stress Disorder (link to BBC News Report about the Pavilion and Gibson's links with it). Although the cafe will not be ready until spring next year, a really excellent buffet was provided. LATCH are very keen to use this ideal venue for further events.
Panoramic of from the 'cockpit' of 617 Room, Penarth Pier Pavilion


Friday, August 2, 2013

Amazing day

We are still in awe, and will remain so for a while, because of the funeral yesterday, which went so well. For us it was wonderfully providential.
There were about 300 at the service (many also watched online apparently) and a pleasing number went with us to the grave and then afterwards for tea at the hall. If you were amongst them, thank you again for supporting us, especially those who traveled at significant cost from Ireland, France, Scotland and England.
The church folks (plus some notable extras!) did sterling service at every point, from the PA, organ, the stewarding, the food preparation and serving, caring for guests from afar, and cleaning up afterwards. There were so many stand-out moments. Many have said how big an input Padi had on the service itself and even though the Pastor led the whole thing Padi was involved in each part, notably the Rev Vernon Higham's prayer and the Pastor's message. The service has now been published to YouTube in case you would like to see it: A version of the order of service is available from this link (this is the one we supplied to the publisher): https://dl.dropboxusercontent.com/u/18921/Kids/20130731-PadiOrderofService.pdf

_DSC1352When the short graveside service concluded we were all standing quietly for a few moments. Then someone pointed out Wendy's grave and it was almost as if a curtain was drawn back on heaven. When we were talking with Pads about his arrangement he became especially attached to the location of Pantmawr Cemetery for two reasons. Firstly because it was on the way to Auntie Ruth's and secondly because Wendy was buried there. No-one, humanly speaking, saw to it that Wendy and Pads mortal remains are now practically 'toe to toe'. It is a simple and transporting mental leap for us to imagine them rising up together at the Second Coming of Christ.
This link takes you to a copy of what we provided as a guide for the Pastor in the service.

Thursday, August 1, 2013

Photos of Padi

I've finally completed a mega-set of photos of Padi from his whole life. This link takes you to the view of them:
http://www.flickr.com/photos/amoebaswarm/sets/72157634880467745/
We were reading with the family yesterday, when Kay from LATCH called. She was due to visit, to check on us and drop off another charity cheque.
We read again in Matthew 26:
63 But Jesus held his peace, And the high priest answered and said unto him, I adjure thee by the living God, that thou tell us whether thou be the Christ, the Son of God.
64 Jesus saith unto him, Thou hast said: nevertheless I say unto you, Hereafter shall ye see the Son of man sitting on the right hand of power, and coming in the clouds of heaven.
Now, as I was saying in a previous post, there were two levels operating here. The reality as experienced by everyone, and a spiritual reality which transcended the merely temporal. Jesus famously remained silent until, when challenged as the high priest did. Being God, he could not deny himself. This is one of the few things that God cannot do. The word 'hereafter' in his reply seems strange though, as if the people present were just about to see what he describes, if not that day, then soon. Nearly 2000 years have passed and all these died without seeing, 'the Son of man sitting on the right hand of power, and coming in the clouds of heaven'. Was Jesus simply wrong? Even though his terrible death by crucifixion was to happen later that day, Jesus could see past that. Time is such a strange thing compared to eternity. The brief moments of our lives slip by illusively and we're left with fragments of memories (if your memory is anything like mine!). Years turn into decades and then we pass on into eternity. With eternity in view, we are all just a few moments away from the culmination of all things, when we will all see 'the Son of man sitting on the right hand of power, and coming in the clouds of heaven'. Are you ready, are you saved?

Sunday Best - Pads, Ash and Bo

Tuesday, July 30, 2013

Preparations

Comforting cards and messages continue to stream in. Some have begun to post up messages to the online obituary notice. If you would like to view or add to them, click on this link: https://www.bmdsonline.co.uk/28894203
I've been working on the order of service for Thursday, slotting in Padi's hymn choices, which, as you can see from the picture of his journal (click on it to get a bigger view), he'd already chosen two years ago (the others are on another page). It's clear from his writing that the sting of death had been removed by Christ. There are always two realities operating. The one of 'sense' and the one of 'spirit'. We observed this when reading about the betrayal and capture of Jesus. I'll say more about this below. First though:

2013-07-30 15.57.02Important messages about the funeral:
  • All welcome - some have asked if it's 'family only' - but we want as many of you to come as possible.
  • Come early - the service is due to start at 1:30pm. 
  • Parking is very limited near the church. Pen-y-Wain Road is amazingly busy so even dropping off is tricky. There are only two disabled badge-holders' bays. The best plan is to park on Ninian Road and walk up Morlais Street.
  • Come to the tea. We've got a range of food-types planned, with a decided Padi theme...
  • The post-code for the burial will probably lead you to a red-faced Pantmawr Road resident's front door! The narrow lane that leads to the cemetery is on the bend as you come off the A470 (see map below or follow this link: http://goo.gl/maps/cfVlK ). 
  • If you cant come, remember we plan for the service to be streamed live to the internet and you can access this from the following link: http://tabernaclecardiff.org/go/live 



In Matthew 26 we see Jesus in the garden of Gethsemane praying earnestly that if it were possible, 'let this cup pass from me'. The spiritual and scriptural realities were foremost in Jesus mind since he knew he had to fulfill prophesy and that included laying down his life as a ransom for our sins. His prayer could have been altogether different, as he says while rebuking Peter for attacking the High Priest's servant. The disciples, as we are all prone to, were operating in ignorance of the spiritual/scriptural dimension. As ghastly as events were, there was a purpose to them. If the disciples had fought on, they may well have been slain instead of living to see the resurrection and carry the gospel to a waiting world as apostles. If Jesus had prayed for those angelic legions he could not have saved us through his death on the cross. Jesus' pain was very real, but he did not panic because he perceived and acquiesced to the better plan. We may not know the details of the plan but we can confidently leave that with God, who never makes mistakes. When Jesus was finally awakened from sleeping in the storm-striken boat, the fearful disciples accused him of not caring. He rebuked their lack of faith but had they been on closer terms with the Saviour they would have felt at ease disturbing him before the storm or their tempers reached such a fearful pitch. This is still true today: 'When we walk with the Lord, in the light of His Word, what a glory he sheds on our way.'

Matthew 26: 51 And, behold, one of them which were with Jesus stretched out his hand, and drew his sword, and struck a servant of the high priest's, and smote off his ear.
52 Then said Jesus unto him, Put up again thy sword into his place: for all they that take the sword shall perish with the sword.
53 Thinkest thou that I cannot now pray to my Father, and he shall presently give me more than twelve legions of angels?
54 But how then shall the scriptures be fulfilled, that thus it must be?


Saturday, July 27, 2013

Padi's things

This is not going to be easy for you to read but I thought I'd just go ahead anyway to update you.
With an efficient yet discrete swoop, various contraptions were collected yesterday morning at 9am - the bed, bath seat, etc., on loan from the NHS. His wheelchair was provided by LATCH but has not found a new home yet. I can still remember looking at the smaller model we were first given, wondering why we'd need it...
Gradually we find places for Padi's things. As we do so we fondly remember their affiliation with him. The various entertainments that kept him contentedly amused. The book mum read to him, the i-pad (for audiobooks, email, games, LoveFilm, Facebook), 3DS, Bible and 'daily readings' books. Then there's the hand bell which was used to summon help or attention, the manicure set with which he kept his nails immaculate. Various lotions and potions to deal with his irradiated skin and PEG site. The eye patch, the tea cup mat. The baby monitor and torch.
Many of these things are reminders of his ill-health. Amongst the flood of kind communications, some people clearly struggle to know what to say, with some suggesting that the only comforts we had were the knowledge that his suffering is at an end and that we can take refuge in all the happy memories of Padi.
While both of these factors play a part, alone these kinds of thoughts leave an aching void, like the gap behind me awaiting the return of the 'normal' bed to his room. I mentioned before that the conference provided a ready-made week of useful structure and activity which helped to break our fall. On Wednesday night we met Joel Beeke, one of the speakers who, upon hearing our story, decided to focus particularly on the 'Puritan view of Affliction' for his talk the next morning. You can see him on YouTube, mentioning our "15 year old boy" just after 58 minutes. He listed a number of ways that we can cope with affliction, remembering that the Puritans averaged about ten children, losing 50% of them through disease. More than 50% of puritans were incarcerated for their faith. They knew affliction. For the Christian, the question is, how can I really be like Jesus Christ in this affliction? Casting out self pity, we "consider him" Hebrews 12:3. Dr Beeke gave eight ways of doing this: Consider... the passion of Christ, the power of Christ, the presence of Christ, the patience and perseverance of Christ, the prayers of Christ, the plenitude of Christ, the purposes of Christ, and the plan of Christ. We have an 'all-sufficient' Saviour and a gospel that is designed by God to meet our every need. In fact, the only real and solid comfort we have is bound up in the sure and certain knowledge that these things are supremely Padi's things, and nothing...
neither death, nor life, nor nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord. Romans 8:38-39
On a point of clarification, some are interested to know a bit more about what we mean by 'avoid wearing only black' to the funeral. The funeral will be 'traditional', as per Pads wishes, and so a level of formality would be appropriate. Some will feel they want to wear black out of respect and tradition, and that's really fine. But we are not going to be wearing only black. To give you an idea, I'll probably wear my dark suit, white shirt, and navy blue tie. You should feel free to follow suit.

Sunday, July 21, 2013

The Lord gave...

Padi passed away at around 1:30am this morning. Although he was probably not aware of us, Ally and I were alone with him at the bedside as he calmly stopped breathing. There was a great sense of peace mingled with sadness. We are so thankful for Jane's help, our CLIC Sargent funded specialist nurse, at various times during the last 24 hours, but especially in the night.
It was a great honour and privilege to know and especially to parent Padrig, but now he is with his Heavenly Father and we will follow him in just a few fleeting years.
...the Lord gave, and the Lord hath taken away; blessed be the name of the Lord. Job 1:21
I've been saving this short video of him for this occasion because it shows something of what he was like.
The world look upon some of their families, coming out like a fresh blooming flower in the morning, their cheeks covered with the bloom of health, their step bounding with the elasticity of youth, riches and luxuries at their command, long, bright summer days before them. The world say, "There is a happy soul." God takes us into the darkened room where some child of God lately dwelt. He points to the pale face where death sits enthroned, the cheek wasted by long disease, the eye glazed in death, the stiff hands clasped over the bosom, the friends standing weeping around, and He whispers in our ears, "Blessed are the dead." Learn that Jesus gathers His saints in love. When Jesus gathers His own, He does it in love. Do not mourn for them as those who have no hope. Jesus has gathered them into his bosom. They shall shine as the sun.
RM McCheyne on Revelation 14:13 'And I heard a voice from heaven saying unto me, Write, Blessed are the dead which die in the Lord from henceforth: Yea, saith the Spirit, that they may rest from their labours; and their works do follow them.'

Saturday, July 20, 2013

Hello hyoscine, farwel Ysgol Mynydd Bychan

Hyoscine is used in palliative care to dry up secretions which the patient would otherwise struggle to clear. A small dose of hyoscine had been added to the mixture of drugs in the driver yesterday, but Ally called out our nurse in the early hours this morning to administer some more as Pads breathing has been rattling increasingly.
We are grateful to a small group of parents who have, for many months, helped daily with the school run so that our appearances at the school gates have been very limited. But yesterday, Ally went, with some trepidation, to meet Bo coming out of his last day in Ysgol Mynydd Bychan. It marks the end of our children's attendance there since Moli began in reception. It's not a big school, the plot has no large grassy field or space for expansion. A limited pool of talent compared with other local schools has meant pupils learn the worth of being rewarded for doing their best, regardless of actual success at county or inter-school level competitions. Nonetheless, it has provided a happy, safe and positive environment for the children's development and we are very grateful to the whole school community, the staff especially, of course, who were well worthy of the brownies Ally sent in. But it was emotional for multiple reasons and the inevitable questions, 'How's Padi?' and 'How are you?', were hard to field. The ready answers are, 'comfortable' and 'as you might expect' respectively.
Meanwhile, back at the bedside, it is delightful to pick some gloom-repelling gems from our arsenal of hymns to quietly sing, such as, "When peace, like a river attendeth my way, or sorrows like sea billows roll, whatever my lot, Thou hast taught me to say, 'It is well, it is well, with my soul".
Tears are permitted to us, but they must glisten in the light of faith and hope. Jesus wept, but Jesus never repined. We, too, may weep, but not as those who are without hope, nor yet as though forgetful that there is greater cause for joy than for sorrow in the departure of our brethren [or even children! Ed.]. (Spurgeon sermon 1036)



Wednesday, July 17, 2013

Of penguins and lions

We've had a fairly calm 24 hours, thankfully. Pads has not talked again, but he had called out, especially when we try to move him. We're also keeping a close eye on his temperature, which has required paracetamol to control. It's impossible to work out the cause of these spikes.
It was great to see Pads' cousin Anwen yesterday, back from her reconstituted 'Oz experience', complete with jet lag and a gift for one of his school-mates. He and Padi share many interests, a love of penguins amongst them, and this sent Anwen in pursuit of a plush Fairy (or Little) penguin, native to Australia and New Zealand, in Sydney Zoo.
Little/Fairy Penguins
(image cc fir0002 http://flagstaffotos.com.au ). Sadly, Pads showed no signs of consciousness and it was hard to be confronted with such a dramatic change in the time she's been away. Anwen also spotted another kind of Lion, in the form of Brian O'Driscoll. The whole of the 3rd Test is available on YouTube at http://www.youtube.com/watch?v=_X97zh2ijEU The scale of that victory by the Lions was only comparible to Wales defeat of England recently, to claim the 6 Nations Championship. In both games, supporters could sit back for a large part of the second half and rejoice as their team continued to play 'out of their skins', watching the seconds tick down in delicious anticipation of the inevitable victory. If you hadn't guessed already, I can't resist alluding to this in connection with Padi's battle with cancer. Because there is yet another kind of lion, The Lion of the Tribe of Judah, one of Christ's titles which our pastor preached about last Sunday (we have just started a YouTube channel where you can watch this sermon - see http://www.youtube.com/watch?v=8jvx2qO_f4o ). On one view of Padi's bed, death and disease seem to be the ones I with a vice-like grip on unfolding events. But that is not the whole story. We have One who is Almighty to save. With each passing moment, Christ's victory, a victory gained through apparent defeat on the cross, draws nearer because that victory is shared with all who call upon His Name. In His body, by His death and resurrection He abolished death for us and the scale of that victory is beyond anyone's powers of description. It behooves us to at least check any rising sadness and at least dart a glimpse towards a glorious outcome and a Wonderful Redeemer.
51 Behold, I shew you a mystery; We shall not all sleep, but we shall all be changed, 52 In a moment, in the twinkling of an eye, at the last trump: for the trumpet shall sound, and the dead shall be raised incorruptible, and we shall be changed. 53 For this corruptible must put on incorruption, and this mortal must put on immortality. 54 So when this corruptible shall have put on incorruption, and this mortal shall have put on immortality, then shall be brought to pass the saying that is written, Death is swallowed up in victory. 55 O death, where is thy sting? O grave, where is thy victory? 56 The sting of death is sin; and the strength of sin is the law. 57 But thanks be to God, which giveth us the victory through our Lord Jesus Christ.  (Paul in 1 Corinthians 15)
Dry your tears, ye that stand around the bed of the dying believer, the parting moment is almost at hand -- a cold damp is on the forehead -- the eye is fixed -- the pulse too feeble to be felt -- are you staggered at such a spectacle? Nay! let faith do its part! The chamber is crowded with glorious forms; angels are waiting there to take charge of the disembodied soul; a hand gentler than any human is closing those eyes; and a voice sweeter than any human is whispering -- "Surely the Lord giveth his beloved sleep." Henry Melvill (1798-1871), in a Sermon entitled "Death the Gift of God.", cited by Spurgeon in commenting upon Psalm 127. (Thanks to Daniel for providing this quote).

Tuesday, July 16, 2013

Bo's Show

Yesterday was calmer. Padi had an increase in the midazolam dose. When we got back from Boaz's Year 6 leavers show, Padi was even trying to talk a bit. A lot of it was too faint to catch and it was not possible to get clarification. But he said, 'good night Bo' distinctly. With greater confidence that he was listening, I chose to read his favorite Psalm, the 46th, for our evening devotions to God, 'who answered me in the day of my distress, and was with me in the way which I went.' (Genesis 35:3).
Boaz played one of two scarecrows in The Wizard of Oz. He was also one of four children awarded with a trophy recognising their excellent contribution to school life right from their first year. This was the first of its kind, named after one of the parents who passed away last year, Brian Hibbard, and presented by his widow.
Three of the group of Padi's friends from his time at Mynydd Buchan were helping backstage. They are part of the group raising funds as 'Pray4Padi' and took the opportunity to shake a bucket for the Kids Cancer Charity as people left.
We've had a quiet night too. Padi's mouth breathing varies in depth and noise. He occasionally coughs strongly to clear his chest. I pop a few drops of water into his mouth with a syringe now and again and use cotton buds to line his tongue with 'oralbalance' gel.

Monday, July 15, 2013

Footprints

There is a famous Christian poem called 'Footprints'. In the poem the writer, used to walking with God, notices that there were only one set of footprints in the sand over certain difficult periods of his life. Wondering at this, that his God would desert him in times of trouble, the reply comes back that these were not times of abandonment but times where the writer was carried - the single pair of footprints were those of Jesus. It struck me yesterday that our experience is slightly different. For me, the poem emphasises the picture of being carried during tough times but a vital principle is underplayed. Yes there is a sense in which God carries us all our days (as in http://biblehub.com/isaiah/46-4.htm). But the individual in the poem seems to remain ignorant of being carried until they are able to review a substantial period of their life. However, part of the purpose for trials is that in them we encounter God and through them we walk with Him, drawing upon His grace and strength, and He walks with us. One of the main creation ends for us is to be God's people and for Him to be our God. That sounds like stating the obvious. But the frequency with which this is repeated in the scriptures justifies repeating it here. I was thinking about this because, once again, Spurgeon's Cheque Book of the Bank of Faith entry for 14th July (full text below) speaks with great clarity and consolation to our situation. He's commenting on Psalm 55:22 'Cast thy burden upon the LORD, and he shall sustain thee.'
Padi had a fairly peaceful Sunday until the evening.  His eyes would snap open and he'd let out a yelp. We gave dose after dose of strong medication: diamorphine, midazolam and fentanyl, but he was still expressing pain. It is disconcerting to hear these cries and this is heightened in that he is unable to respond to questions about the cause of his agitation. We were warned that his temperature control could go haywire but his was 39 degrees Celsius, pulse racing at 140, it must affect his sense of well-being. Thankfully the temp has responded to paracetamol although we have no idea if the spike is actually being caused by an infection, perhaps in the chest given how much he lies completely still. All his other medication has been stopped so I don't imagine we'd be giving him antibiotics. Because of the gastrostomy, we can make sure he gets plenty of fluids, although we're not feeding him. It's amazing to think back to 8 days ago when he was still fancying and enjoying the most part of a battered sausage.

Thursday, July 11, 2013

The worst thing

Thankfully it was another calm night, and Pads has a peaceful air about him. He only asked for pain relief when we were changing his bed first thing.
Padi is very economical with his words now but he clearly asked me to read Spurgeon's "Faith's cheque book" for today and it is amazingly apt and helpful (full text below). I've noticed in film and TV how the very worst thing that can happen to anyone is their death. As Spurgeon says, in a sense the worst thing has already happened in our separation from God, the rest flows consequential to that. Christ's atonement (at-one-ment) mends the rift and opens heaven.
We were in Matthew 14 for family worship this morning. We gather in with Padi: although he does not give much evidence of taking part he asked ages ago for us to just go ahead regardless each time. The subject of this passage includes Jesus walking on the water and Peter asking to join him on the sea. Peter begins to sink when alarmed by the tempest. With hindsight, he should have trusted his first instinct of implicit, childlike faith in God's Son.
We sang, "Lead us Heavenly Father lead us, o'r the world's tempestuous sea. Guard us, guide us, keep us, feed us, for we have no help but Thee. Yet possessing every blessing if our God our Father be." This verse was sung as a closing prayer at every one of my high-school assemblies.
Faith's Cheque Book for July 11: Never Separated from God
And whosoever liveth and believeth in me shall never die. Believeth thou this? (John 11:26)
Yes, Lord, we believe it; we shall never die. Our soul may be separated from our body, and this is death of a kind; but our soul shall never be separated from God, which is the true death—the death which was threatened to sin—the death penalty which is the worst that can happen. We believe this most assuredly, for who shall separate us from the love of God which is in Christ Jesus our Lord? We are members of the Body of Christ; will Christ lose parts of His Body?


Calm

Just to report that, thankfully, Pads has had a calm day with just one call for breakthrough relief this morning. We've also enjoyed a calmer house, although I was out today at Boaz's final mabolgampau (sports day, in which he won 3 medals) in the morning and then the prayer meeting tonight. Pads is not able to communicate very well, has trouble finding his words, especially in finishing a sentence. This morning he was fairly insistent wanting to see Jane, the nurse, but we couldn't get out of him what he wanted her for... He asked mum 'what happens next?' Without being able to get clarification, she assumed he was referring to the progress of his disease. We've always kept him informed so she gave the explanation which the doctor gave last week, i.e. that the tumour is spreading along nerves and coverings of the brain towards the brain stem so that would likely mean he 'forgets' to breathe. His breathing in the nights is usually noisily reassuring but we turn his fan off to hear it more clearly. It's quite likely that we will not notice his passing. We were telling the other kids this at tea tonight with predictable effects.
I felt really helped by the Bible Study tonight. Mr Higham asked, 'Are you wealthy? What help is that in bereavement? The Christian has infinite resources in Jesus Christ to draw upon'. For example, Jesus said he is 'The Resurrection and the Life'. Miraculously, Jairus had his daughter raised from the dead by Jesus, only for her to die again years later. My son will rise again to live forever. It is a spiritual reality and a strong consolation.