Saturday, March 30, 2013

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


Unknown said...

We are so far away, but have followed your blog, and want you to know that we are praying for you all. It is wonderful to see your faith, and what a witness this blog is to the unsaved. Heaven alone will reveal how many have been touched, and, God willing, saved by your witness. Give our love to dear Pads. Pain is a depressing thing, and I am especially praying that he may still be able to experience the joy of his salvation and have calm and assurance. I was reading this morning that when one part of the body hurts, we all suffer, and we wish we could lift some of the burden for you. Much love to you all, Meryl and Steve. NZ

Mike Johnson said...

Thankyou for all your prayerful concern ! We have had a better day today although pads didn't make it out to church tonight . Thankfully the night only had one interruption and probably the steroids are helping keep the pain at bay - we did not need to give any breakthrough pain relief.