“Turn your eyes upon Jesus
Look full on his wonderful face;
And the things of earth will grow strangely dim
In the light of his glory and grace.”
I read literature recently by some Christians who don’t like this hymn. Such folk think it downplays the goodness of creation, and makes people retreat from the surrounding world. I think their concern is for something important: God made things for us to enjoy, and we shouldn’t pretend to be pious in rejecting God’s good gifts.
However, even ignoring the fact that the people who complain about the hymn’s sentiments are often those for whom the ‘things of earth’ are more easily accessible and enjoyed, that’s really not the point of the words.
They communicate the reality that whilst created things can be enjoyed, they should point us to the Creator. Compared with Him, ‘stuff’ just loses its brilliance and veneer of preciousness. The whole hymn is about death, and everlasting life, and when all else is taken away, if you know and have Jesus then you realise he’s all you need (Tim Keller says that more poetically, but I’ll stick with my way of putting it).
Why bother writing about this? Is it because slightly unbalanced theological reflection is so irritating that it deserves a public scalding? Perhaps.
But, primarily, it’s because tomorrow (21st August) would have been my little Tilly girl’s 4th birthday, and when she died in October, the words of this hymn were the last words she heard; today seemed like a good opportunity to share a little bit about what that night and that hymn have etched into my life. Not because I’m a literary exhibitionist, but because so many people were touched by Tilly’s life that this chapter seemed good to share as well.
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If you know us, and our family situation, you’ll know about Tilly’s tumultuous life. Born with an extremely rare genetic mutation, she suffered with an epileptic encephalopathy that produced multiple seizures and disabilities. In and out of Great Ormond Street Hospital, her short life was one of medications, medical procedures, and round-the-clock medical care from me and Abi. You can read more about this in a post from two years ago.
When Tilly was two and a half, the seizures became less of a problem; not because they improved, but because she started having severe bleeding in her lungs, posing a terrifying threat to her life.
Inexplicably, and previously unknown to any doctor anywhere, Tilly’s chest was full of hundreds of arteries that shouldn’t have been there. They connected into all parts of her lungs, and it was inevitable that this vascular pressure would cause bleeding.
Several ICU admissions followed, and the world’s most skilled interventional radiologists performed procedures which involved inserting plugs and glue into those arteries. They worked for a month or so at a time, but then a stray cough or sneeze would bring the blue-lights of emergency services into our lives again, and we’d have another anxious time in ICU, praying that she would be able to extubate and come home.
In September, after another admission and intervention, we were told that the time had come to stop trying to rescue Tilly. She had managed to leave ICU and go to the neurology ward, where we were preparing to go home, and we had a meeting with her consultants and specialist nurses, including the palliative team. Tilly wouldn’t survive another ICU admission; the ventilation would irreparably ruin her ability to breathe.
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As time now slows down in this narrative, I want to warn you of what is about to follow. I’m not going into any minute detail, but I am going to give you a glimpse the darkest night.
Maybe it will help you understand us a bit better, and why this pain of losing a child isn’t an event to ‘get through’ but a grim gateway into a new mode of experiencing life.
Maybe it’ll help you face up to some of your own brokenness.
Maybe it will make you realise that the manner in which this world needs putting right transcends the grave.
Maybe it will prompt you to look again upon Jesus’ wonderful face, and just turn down the brightness of your things of earth that are too prominent right now.
Whichever applies to you, please don’t treat lightly what comes next.
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Back to that consultation.
We had to make plans for what would happen if Tilly bled again; we would try to stabilise her, but the medical teams wouldn’t intervene, except to make her comfortable. We talked about hospices, hospitals, what drugs we might give her. Abi (a trained nurse) was offered the opportunity to practise administering sub-cutaneous morphine and midazlolam, drugs that would take away the feeling of breathlessness and keep Tilly calm, in the event that things happened at home.
As I began feeling lightheaded and sick at the content of this conversation, one of Tilly’s consultants paused; he had been the first to diagnose and admit her to GOSH, and as he wiped tears from his eyes, he said we should take a moment to recognise just how distressing this was for all concerned. Looking around, we saw all of Tilly’s medical team felt the same. She never met anyone without leaving them affected.
More talk. The plans were put in place, and we left the room, with everyone expressing their fervent desire that the most recent radiology intervention (more glue) would keep Tilly safe for many months.
Two days later, as we were getting ready to bring her home the next day, there was another bleed.
Not as bad as previous ones. And it did stop. Would this now be the pattern? Sporadic events, but manageable and non-life-threatening? It seemed possible. We prayed that it might be.
Those prayers were not answered as we would have wished. More bleeding followed, and family and godparents quickly made their way to GOSH.
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We were in a side room on the neurology ward, where Tilly had spent so many months of her life. If we could have chosen the place for her to die, this would have been it. The staff adored her, and had thrown themselves into her care for three years. It was fitting that they would be the ones to manage this final stage, and they made sure that one nurse was completely focussed on us, with no other responsibilities.
The rooms are nice and modern, and a good size. Chairs and stools appeared as Tilly’s loved ones came to spend some final time with her. The blinds over the windows to the corridor were half open, letting in some of the light, but we only had a small lamp on by her bed. Even in spite of all the oxygen and monitoring equipment, it didn’t feel clinical, and we were able to sing, and pray, and cry, as the night and day went on.
I can’t remember when we decided, with the palliative team, to start the medicines. This continuous infusion of drugs would make Tilly sleep and be peaceable, even as her ability to breathe worsened, but it is very much the point of no return; short of a miracle, the reason this decision is made is because there is no hope of recovery. I can’t remember when we decided, but I know that we did, and that we needed to prepare ourselves.
It’s very hard to describe these things without resorting to cliche. Food did indeed turn to ash in our mouths; time passed slowly and at breakneck speed, all at once; faces around us merge in our memories, such that we cannot remember much about that last day.
I do remember barely letting go of Tilly’s hands. I definitely remember holding her, and kissing her, and Abi lying next to her for most of the day and night. I remember our families doing what they always had done, being there and supporting in any and every way they could.
As night fell, Tilly’s breathing became more shallow. We reached midnight, and then we were just alone in the room with her, and then her godparents came in to be with us. The whoosh of the oxygen was the only sound. The monitoring equipment no longer needed to be on. Those numbers would have shown nothing we didn’t know.
I broke the silence by asking one of her godfathers to read 1 Corinthians 15:50-57. It was, in one sense, a jarring sound, to hear about victory over death and imperishability as we saw what seemed to be the very opposite lying in that bed. To the nurse who was stood in the corner of the room, it may have sounded like a taunt, like the most painful gloating and mockery one could dare conceive.
Yet these words were written precisely to be heard in the context of brokenness. And they are a taunt, a mocking cry intended to sneer at a loser; but the loser is death itself! Whether Tilly could make out the words or not, they stated her present and her future with even more accuracy than the painful pronouncement of the doctor which followed less than an hour later.
“For this perishable body must put on the imperishable, and this mortal body must put on immortality…O death, where is your victory?”
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Never has there been a mother like Abi. Throughout Tilly’s life, Abi knew everything about our little girl, and fought for whatever she needed, and never missed anything. If Tilly’s life exploded the expectations of all the medical teams, expectations of length and quality and experience, it was because by God’s grace Tilly had a mum who pursued her well-being without fail.
At that moment, Abi knew that Tilly didn’t have much longer, so she started singing a song that she had always sung in Tilly’s ear.
“Turn your eyes upon Jesus, look full on his wonderful face.”
Tilly was lying in Abi’s arms on the bed. I’d been holding Tilly’s hands, and I gripped them more firmly at that point.
“And the things of earth will grow strangely dim”
I think I finally understood that line. This life is to be lived, and enjoyed, so far as we can, but there’s a reason that so many biblical writers press upon our attention the transience of our existence. We need a proper perspective, and in the gospel, God kindly lets us have it.
“In the light of his glory and grace.”
How seriously do we take the faith, we who profess to be Christians? Are our perspectives dominated by resurrection realities, or is the hope of new creation just a nice idea that the preacher occasionally throws out? Is the grace, the undeserved favour God has shown us in Christ, the thing that defines our lives, or just a good story to sing about once a week? What’s shining most brightly in our lives?
As Abi finished the final line, I waited a few seconds and began another of Tilly’s favourites, ‘How deep the Father’s love for us.’ I’d seen her smile as we sang this every day, and watched as her heart rate settled upon hearing of the cross of Jesus. I thought it would be a good one to sing next.
I only sang the first few words. The godparents, who had joined in to keep my wavering voice company, went silent a few seconds later.
Tilly had stopped breathing.
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During the days that followed, we saw dear friends and family at the hospice where Tilly’s body had been taken. We had to make funeral arrangements, and the choice of sermon text was obvious: Mark 5:41.
This was the text that gave us Tilly’s name, ‘Talitha’. The whole verse reads:
“Taking her by the hand he said to her, ‘Talitha cumi,’ which means, ‘Little girl, I say to you, arise.’”
That Talitha had died, but Jesus gave her life with a simple word. The Lord of life will one day raise his people from death with the tenderness and gentle touch of bringing a child from sleep, and our Tilly will hear those words spoken to her: ‘Talitha cumi.’ For us, without saying anything at all about anyone else’s children, the question of what lies beyond the grave for our lost children is not wishful thinking, but wise theology, captured in an old Reformed statement of faith: Christian parents “ought not to doubt the election and salvation of their children whom God calls out of this life in infancy.” From the wideness of God’s mercy in the covenant of grace, to the way in which Tilly showed great joy as we spoke and sang with her the good news of Jesus, we have enormous comfort that not only is her suffering ended, but she has a greater joy than we have yet known.
But this isn’t a grief-killing medicine; “sorrowful yet always rejoicing” was what the apostle Paul said about his own life, and this captures true Christian existence. The joy of knowing God in Christ is infinite and everlasting, but in this life it co-exists with sorrow. Without wanting to affirm all that the following author says, I still think that Nicholas Wolterstorff captures something of how we feel when he spoke about losing his son:
“Sometimes I think that happiness is over for me. I look at photos of the past and immediately comes the thought: that’s when we were still happy. But I can still laugh, so I guess that isn’t quite it. Perhaps what’s over is happiness as the fundamental tone of my existence. Now sorrow is that. Sorrow is no longer the islands but the sea.”
Are we now permanent grumps and kill-joys? I hope not. But the British way of ‘getting on and getting over’ is a frustrating character trait that isn’t biblical. I don’t care how other people have handled their grief. I don’t care if I come across as too serious, or sad.
I watched my daughter stop breathing, and instead of planning a nice present for her birthday tomorrow I ordered a headstone for her grave.
I am grateful for family and friends who know this, and who never make us feel like we need to apologise for our grief. And I am grateful when dear Christian brothers point me in the right direction.
One reminded me, when I commented that it all felt like a nightmare from which I wanted to wake up (I told you that cliches are difficult to avoid), that in once sense, it is. Glory beyond all comparison will one day make this seem light and momentary.
And one of Tilly’s godfathers made a comment that I will never forget (and I stole for her eulogy!). He said that God delights to choose the weak things of the world to shame the strong. Supremely true of the manner of salvation (a bloody cross), but also true of how he works even today. Tilly was weak, weaker in body than most people you’ll ever meet. But God used her, and her life, to bring about good and praise and worship and grace and joy and life-changing-awe to an extent that we are still discovering. (we definitely made good choices of godparents)
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We’re not even a year past her death yet. I don’t know what our grief will look like at her next birthday. There’s so much to say even now that hasn’t been said, that can’t be said.
But I do know that on that great day in the future, when God’s people are raised to glory and eternal life, a cemetery in north London will hear my little girl’s voice shout out the words “O death, where is your victory; o death, where is your sting?”
“And the things of earth will grow strangely dim,
In the light of his glory and grace.”
Steadfast Reflections 