“His optic nerve is pale and visual activity is poor. The next step is more testing. I’m sorry I can’t give you a more definitive answer right now, but I’ll see you in four months time.”
These [paraphrased] words were not what we were wanting to hear when we took our almost five month old son to an ophthalmology appointment yesterday, but reality doesn’t care about what you want to hear. We have known ever since the diagnosis of hydrocephalus from a grade four bleed in the brain while in the womb that there was likely, medically speaking, to be some effects from the internal brain injuries during the developmental stages. The neonatologists even went as far as to say there was a high likelihood that the resulting impact would be fairly severe, given the serious nature of what occurred somewhere between 20 and 32 weeks. I remember asking about whether his hearing or sight would be impacted on the day when they broke the news to us about the likelihood of hemiplegic cerebral palsy on the left side of his body. I remember the horrible feeling when they said “we don’t know”. Fast forward several months. He has been through so much and bounced back from all his surgeries so well that it became tempting to think perhaps we were over the biggest hurdles. The last couple of weeks though, I’ve felt squarely back in the land of many unknowns as far as what lies ahead.
My wife and I aren’t medical experts, but we’ve found ourselves asking questions in recent weeks like “why doesn’t he follow a torch or a light-up toy, and why doesn’t he focus on my face when I’m engaging his attention from right in front?” We’ve been sensing that something might not be as it should be, hence the appointment.
As always, I don’t want to be too dramatic. There is a possibility that the proper coordination of the eyes when it comes to tracking object movement or the proper function when it comes to processing visual input could be delayed and may correct over time, but there is also a chance it won’t. The next step the doctors have recommended is electrophysiological testing, which uses electrodes placed on the skin to determine whether the pathway from the optic nerve (behind the eye) to the visual cortex (the main visual processing centre) at the rear of the brain is functioning. I’d love to have the test done tomorrow, but with only one specialist in the state able to perform the test, there could be a bit of a wait.
Leaving the hospital was a case of mixed emotions; no good news, some hope to hold on to, the knowledge that God has all things in His hands and is working even the dark situations in life for our ultimate good… honestly I’m not sure which part of the roller coaster this is, but it doesn’t feel like the bit where you’re enjoying the view from the top.
The experiences of the last couple weeks, culminating in yesterday’s appointment, have made me ask some questions to which I’ve not previously put much thought. How do you adequately explain the concept of light and dark or different colours to someone who can”t process visual information? How isolating must it be for a baby who hasn’t learned to understand speech yet, and can’t vocalise proper words himself, to also not be able to see? What can I do to help him right now? I can pray, and I can try to let him know that I am there through sound and touch. Beyond that, I’m not sure.
As I’ve begun to think about what this might mean long term, depending on what the future holds, I’ve found some hope in a phrase that has come to mind from one of my favourite pastor/theologians, John Piper. He often talks about two words in the context of what our role is as human creatures made in the image of God and called into relationship with Him; seeing and savouring. I have been comforted by the knowledge that the most important seeing my son will ever do is not seeing the beauty of a sunrise or the vast majesty of King’s Canyon or the Grand Canyon, it is seeing and savouring the glory of God, especially in the face of Jesus Christ. In 2 Corinthians 4, Paul talks about “the light of the gospel of the glory of Christ, who is the image of God” and “the light of the knowledge of the glory of God in the face of Jesus Christ.”
Therefore, having this ministry by the mercy of God, we do not lose heart. But we have renounced disgraceful, underhanded ways. We refuse to practice cunning or to tamper with God’s word, but by the open statement of the truth we would commend ourselves to everyone’s conscience in the sight of God. And even if our gospel is veiled, it is veiled to those who are perishing. In their case the god of this world has blinded the minds of the unbelievers, to keep them from seeing the light of the gospel of the glory of Christ, who is the image of God. For what we proclaim is not ourselves, but Jesus Christ as Lord, with ourselves as your servants for Jesus’ sake. For God, who said, “Let light shine out of darkness,” has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ.
Whether my son has perfect sight or whether he cannot see at all in a physical sense, I hope and pray that he will come to know the warmth and the presence of this light in his life, even in times of physical darkness. I hope and pray that my wife and I will have wisdom in how to share the light of the gospel with him and that he will learn to love the word of God, even if he has to read it via bumps on a page or listen to it spoken to him – the word which points us to Jesus who is far more beautiful and valuable than any earthly sight or wonder or thing.
Of course, we continue to pray. We know that God hears us, and we know He is with us. When Paul encountered a thorn in his flesh, something that tormented him and that he could not overcome in his own strength, he cried out in prayer and asked God for deliverance from affliction. That is good. It is right that God’s people call on Him in times of trouble as well as times when all is going well. We will continue to ask for healing and for good results from the electrophysiological tests. The challenge, though, is to trust God with the end result. Paul’s thorn in the flesh was not ultimately removed, not because of a lack of faith or an incorrect method of prayer or something, but so that it might become even more evident that God was the one at work in and through Paul, and that God was sustaining him despite the brokenness of his earthly body.
Therefore, so that I would not become arrogant, a thorn in the flesh was given to me, a messenger of Satan to trouble me—so that I would not become arrogant. I asked the Lord three times about this, that it would depart from me. But he said to me, “My grace is enough for you, for my power is made perfect in weakness.” So then, I will boast most gladly about my weaknesses, so that the power of Christ may reside in me. Therefore I am content with weaknesses, with insults, with troubles, with persecutions and difficulties for the sake of Christ, for whenever I am weak, then I am strong.
This is the same Paul who was able to honestly say in Philippians 4:10-13 that he had learned to be content in every situation, having endured more than many of us will face in a lifetime. It’s hard to be content when things aren’t going your way. It’s hard to be content when there are many unknowns ahead, and yet God calls us to bring our worries and fears to him honestly, specifically, desperately, humbly and thankfully. In doing so we are able to lift our spiritual eyes from the circumstances we are facing to focus on God who knows what we need, who provides for us and is always with us, shining a light that the darkness cannot overcome. I pray that, above all else, God will open the eyes of my heart and my son’s heart to see Him more clearly. Though it is painful to think about potential problems with failing faculties in these earthly bodies we all possess, to see God for who He is and to savour His goodness and His glory as a result – that is the most important seeing.
For some resources from John Piper on seeing and savouring God, check out the following links: