Struggles & Signs

For the last two days, Ben’s situation has been improving, inch by inch. He’s been opening his eyes, and yesterday, he was more engaged visually. If his eyes are open, most of the time he looks quite vacant until he momentarily latches on to something or someone…then he’s gone again. He has started to move his left hand around and even offer a faint grip, but yesterday, as the sedative was reduced, he became more agitated and tried to pull his feeding tube out. The sedation level was consequentially increased. Last evening however, the sedative was withdrawn and he seemed more naturally at peace, though he’s wearing the medical equivalent of a boxing glove to stop him pulling tubes out. Whilst he’s breathing unaided, the ventilator and tracheostomy remain. The nurses had him sitting (with much assistance) on the edge of the bed yesterday morning, and even reported that he had given a faint smile at something. But whilst he’s moving his left hand and leg freely about, there is some concern about the almost complete lack of movement on his right side. However on the positive side, a lumbar puncture yesterday has returned a clear result.

The great mystery, yet uncovered, is the cause of it all. The neurological and microbiological teams are continuing to work away, eliminating various possibilities and scanning him for others. We continue to await the results of genetic tests from Oxford and other places. A couple of possibilities that haven’t been discounted leave us somewhat cold. Dabi remains constantly at his bedside from 2pm – 8pm each day, and Catherine and I are there as much as possible also.

It seems so strange that it’s now Day 11 since the seizure that set it off. The outpouring of love and support has been immense from our own local church and community. To have one of my colleagues interrupt his holiday to go into the ICU and spend half an hour alone with a then-totally comatose Ben, to pray for him, was amazing. But there’s also been so much support from almost everywhere. On the spur of the moment, Tom and I went last Sunday to a church with which our family has a strong link. Walking into Grace Church, we were met by a wall of love and compassion from our many friends there, and were humbled to unexpectedly find that a section of the service had already been laid aside to pray for us as a family. To have a crowd stand to pray for our family was strengthening. After the events of this week, to sing hymns and songs, both old and new, focussing not on ‘me’ but on the unchanging nature of our wonderful God and the unassailable truths of His love, His grace, His forgiveness, of Christ’s cross and the eternal life offered to us, was heavenly. To have the scriptures opened and from them, Jesus lifted up and commended again, was just like a balm to my weary soul. Thanks Stuart, Rachel and Rob, Matt, Dave and everyone.

It was balm particularly because for some days, I’ve wrestled with “Why?….And How do I defend God to those many who might think, ‘If this is how God treats His family, I’m not interested in believing in Him’ ?”. Then I again considered how Job (pronounced like ‘Jobe’) and his friends in the Old Testament had tried to explain and defend God’s ways to each other in the face of Job’s tragic circumstances and had gotten it so badly wrong, and were even accused by God of darkening His counsel. Then I realised it wasn’t my job. I can’t see what He sees. I can’t understand all His purposes and ways. Father’s ways are higher. I’m reminded of Isaiah 55, where I read –

For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord.

And then in Deuteronomy 29, I read –

“The secret things belong to the Lord our God, but the things that are revealed belong to us and to our children forever, that we may do all the words of this law.

There are some things we will never understand while in this life – they are the reserve of God. On top of that, we live in broken and confused world that suffers from the effects of human sin at every level and the resultant, momentous fracture from its creator. We experience the result at various levels of our lives. My role though, as one of Christ’s friends and servants, isn’t to explain all God’s ways or why He allows some things to happen. My call is to live out now what we do know and understand from the scriptures, of God in Christ who has entered into our world and into our suffering. My call is ‘to give a reason for the hope that is within’ me, to give a good account, a defense of the gospel of Christ, to show that it makes sense to believe and follow, that it’s based on attested facts and events and that it isn’t some made-up fairy tale. The Holy Spirit does the rest.

And so this last Sunday, in the middle of what are ‘hard to understand’ things happening in our lives, it was so releasing to worship our God who is incomparable, and who has promised never to leave us, so close at hand in Jesus Christ – Jesus, whose body was broken for my broken life to make it whole through faith in Him, in His sacrifice and resurrection; Jesus, offering life in all its fullness, there helping and healing the brokenhearted, there in all His covenant love, grace and glory. It was sublime.

In the meantime, I prepare for my fourth and final scheduled immunotherapy session this Friday, unsure what lies ahead and beyond , but clear about Who walks with me. I ponder these words sent by a friend, a prayer of blessing –

May we discover that the road we didn’t choose, didn’t want to travel, is a highway that leads unerringly towards the Light.