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

Happy Easter!

Happy Easter from all of us! Bo's school wanted the pupils to create an Easter Chick or Bunny from re-cycled materials but the gang thought we could do better than that. This rugged cross, the nails, the impression of a blood-stained body, the 'green hill' (as per the famous hymn, 'There is a green hill far away, outside the city wall, where the dear Lord was crucified, who died to save us all'). As it's the holidays, we had family worship later than usual this morning and Pads was pretty bright when I went in to deal with the feed pump and give his meds so he descended to the kitchen to join us. Following Mr Higham's excellent sermon yesterday on Watching the Crucifixion we read the latter part of John 19 and thought for a bit about different opinions that people have of the cross. Everyone has an opinion, what's yours?
Where I was staying in Holland, near the Belgium border, shrines like the one in the picture below are everywhere...

4km west of the campsite is Mariadorp where there is a church with a massive neon cross that can be seen for many miles around at night especially. But it is not merely seeing a cross which we need, it is the Person who died upon it. We thought about the significance of the blood and water which flowed when Jesus was stuck with a soldier's spear. A couple of weeks ago I was at the Birmingham conference with Jonathan Stobbs preaching from Zechariah 13. He made the point that blood and water were key to the temple and tabernacle sacrificial systems of the Old Testament. The water for cleansing, the blood for atoning - both of these are richly supplied in the Saviour, whose conquered death through death, once for all. Bonar's hymn sums it up well...

No blood, no altar now, The sacrifice is o'er! No flame, no smoke ascends on high, The lamb is slain no more, But richer blood has flowed from nobler veins, To purge the soul from guilt, and cleanse the reddest stains. 

We thank Thee for the blood, The blood of Christ, Thy Son: The blood by which our peace is made, Our victory is won: Great victory o'er hell, and sin, and woe, That needs no second fight, and leaves no second foe. 

We thank Thee for the grace, Descending from above, That overflows our widest guilt, The'eternal Father's love. Love of the Father's everlasting Son, Love of the Holy Ghost, Jehovah, Three in One.

We thank Thee for the hope, So glad, and sure, and clear; It holds the drooping spirit up Till the long dawn appear; Fair hope! with what a sunshine does it cheer Our roughest path on earth, our dreariest desert here. 

We thank Thee for the crown Of glory and of life; 'Tis no poor with'ring wreath of earth, Man's prize in mortal strife; 'Tis incorruptible as is the throne, The kingdom of our God and His incarnate Son. 

It was great to be back together again, I'd returned from Holland on Thursday afternoon. It was the 'networked learning' conference, which doesnt sound very exciting but I had enough of an adventure with rambling, camping, cycling, and trains in Maastricht, AirBnB in Brussels, etc. etc. Photos are here.
Pads' visiting psychologist had been sharing with Ally some of the work he'd been doing. It was along the lines of trying to help Pads see that he feels better for having got up. He certainly does try but often it is only through terrific effort and will-power that he can overcome the desire to stay put in his room. When he really cant manage to come out he finds it hard to bear.