Donations in lieu of flowers

The good people at Green Willow have set up the 'Just Giving' page in memory of Padi. We're asking for donations instead of flowers to go towards two charities close to our hearts:

CLIC Sargent pay for our nurse who has visited us and helped us through many difficult symptoms and situations at our home for years. We are very grateful to and for her. The Just Giving page is at https://www.justgiving.com/green-willow-funerals-donations233/

The other charity is the WVHigham Trust and we're planning for a retiring offering at the funeral (to try and keep things simple). It is hard to estimate the importance and impact of Mr Higham's ministry. He has remained a dear friend to us, and Padrig in particular. The Trust aims to make as much as possible of his long ministry freely available online through the website: www.wvhigham.org

 

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.

Ash alone to Inverness

I'm sorry not to post more often - it's the usual thing of finding the time and the words. In the gap since the last one Asher's been to Inverness and back on his own.
It started as an idea to boost Matthew's birthday celebrations but we were getting frustrated in the planning because Asher's only 12 and so can't fly on his own and the coach will not take anyone under 14 on their own. There are no such restrictions on train travel. He was very keen, with the condition that we would try and minimise changes. Plan A was to take him to Bristol Parkway so that would mean just one change in Edinburgh. But the sat nav led them to the middle of a housing estate 5 minutes short of their deadline so he missed the train. The station staff were very helpful but now he was faced with 3 changes! The journey started with having to stand all the way to Birmingham and then, in a mistake about the 24hour clock he got up too early and lost his seat. Then the train from Carlisle was 20 minutes late and he missed his connection. leading to a 90 minute pause at Edinburgh. One of the trip's highlights was when a station café waiter took pity and got him a hot chocolate 'on the house'. His normally abrupt text message style changed somewhat went he finally arrived at Inverness at 11:30pm, 'I am drained of all energy' he said.
It was not as if this was his first long trip on a train without his parents. He's traveled with big sis previously from Cromer to Cardiff, for example. But being alone is quite different. Thankfully the return journey went very smoothly. He's clearly enjoyed being away and being back with us. This morning he was helping put Pads' dosette box together for the week. Pads has had quite a lot of breakthrough pain (usually requiring 4 400 mg fentanyl melts per day) and the nights are disturbed by trips to the loo which we have to supervise closely. The consultant has mentioned a syringe driver previously and we may well be nearing the time for that. We are so grateful for a period of holidays when the pressures of school runs and maintaining full attention on (my) work can lift for a while. After a disturbed night, being able to lie in a while does make a huge difference.
The photo is a section of a letter which the SENCO organised to alert Parents of Pads' close circle of friends to a change in his condition and steps that the school were taking to safeguard the well-being of all involved. We're really impressed at the way Glan Taf are dealing with all of this. 

Pads has not really got downstairs very much this last week. He was able to go to the hot-tub on Thursday and popped down for a family film last night. We're trying to avoid placing expectations on him as he's always been one for trying his best to please his parents but that is getting increasingly hard as things progress.
I was trying to explain how we cope to a nurse the other day. Often it is easier to pass it off as, 'Oh well, everyone has hard things to deal with', when people ask, especially if there's not much time or the person does not seem to have sympathy with the real answer. In fact, as Mr Higham has said in this remarkable hymn, 'Deep in my heart there is a sigh' (full version on the WV Higham Trust Website):

There is a fellowship of pain
Deep in Thy heart of love,
O suffering sweet, eternal gain,
The tears of heaven above.
O grant me, Lord, to feel this joy,
These tremors of Thy grace;
Engraved by Thee, none can destroy
The riches I embrace.

This is especially poignant at Easter, when we remember the sufferings of our Lord Jesus Christ, the Lamb of God. His passion was abjectly abysmal, yet it opened heaven to sinners. The usual thing is to shun pain and death as only bad. The media regularly treats death as the worst possible outcome. Yet these things are the path of blessing for Christians. We prove that God's grace is sufficient: "for my strength is made perfect in weakness." Paul even says,  "Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me." (2 Corinthians 12:9) And in another place, Paul's great ambition was: “That I may know Him, and the power of His resurrection, and the fellowship of His sufferings, being made conformable unto His death.” Philippians 3:10

Visit to Mr Higham

Pads had a fairly uneventful week... until Wednesday. He'd enjoyed 'Toddlers at Tabernacle' again. Afterwards, Mr Higham was in two minds about whether to go out for lunch. As he tried to sit down again, the office chair had rolled backwards and so he ended up on the floor. A rapid response paramedic arrived to assess the situation but there was nothing for it but to take Mr Higham to casualty by ambulance, which took another 40 minutes to come. While he was waiting he was in quite a lot of pain and feeling very frustrated and worried about Mrs Higham, ill at home. A number of church members were waiting with him and trying to reassure him, Padi amongst them. Pads did not like to see Mr Higham so anxious and eventually said, 'With all due respect, the One who is looking after you, will look after her too.' The room fell silent.
At hospital, the X-ray's revealed a fractured hip which meant only one solution: a routine hip replacement. This was carried out on sucessfully on Thursday afternoon. The picture below is of Padi visiting Mr Higham yesterday afternoon - they are very close friends.