Two years ago today my youngest son was recovering from his second invasive brain surgery. This time, to place a ventriculoperitoneal (VP) shunt into the right rear side behind his ear, to constantly drain cerebrospinal fluid (CSF) from the ventricles in the brain where it is produced, into his abdominal cavity via a catheter tube running internally down his neck. This device, though far from perfect in its design, with something like a 50% fail rate in the first year or two after placement, is a life-saver for children with hydrocephalus. It stops the fluid, which has trouble draining naturally, from building to the point where it squashes the brain against the skull, leading to brain damage and eventually (if left untreated) death.
Way back then, when he was just three months old, we were amazed at how resilient he was and how he had bounced back from his first brain surgery like a champion, but there were so many unknowns about how much his conditions would impact him as he grew and developed.
A (relatively) quick update on Josiah’s progress
It’s been a while since I posted about how things have gone. We have had a few scares, beginning last year while we were on holidays with what we didn’t realise at the time were ‘vacant seizures’. These developed into a more serious form of seizure activity in November, with our boy very ill, limp in body, and hard to rouse. Ambulance… lights and sirens… emergency… lots of medical professionals… several days in hospital. Needless to say this wasn’t fun. It has also happened twice since, including a couple of weeks prior to this post. Thankfully, his medication seems to work the majority of the time and we are hoping a recent change in dosage will avoid further seizure activity.
His cerebral palsy on his left side is much more mild than doctors originally thought it would be, and he is making good headway towards walking. He enjoys time in his walker, supported by a harness as he lunges around the house, and has even taken some steps in the last few weeks, supported by the walker but without the harness on! With ongoing physical therapy we hope to continue to help him improve the use of his left hand.
His vision is probably his most noticeable daily challenge. When we found out he had cortical visual impairment (CVI) we began listening to a podcast called Kaleidoscope: The Cortical Visual Impairment Podcast. It was great to hear the experiences of other parents of children with CVI and, more importantly, to find out that there was an assessment tool and a system of targeted interventions designed by world-leading expert in CVI Dr Christine Roman-Lantzy. I began speaking with my wife about trying to find someone qualified to perform a CVI range assessment and we soon located an orientation and mobility specialist based in Melbourne. I made contact and it turned out just a few weeks later, in March 2020, she was to make her annual trek to Adelaide for the WOMAD World Music festival – so we had a face-to-face meeting and have met regularly ever since to work on implementing interventions that we hope will help improve Josiah’s functional vision.
While neuroplasticity is a huge, complex and constantly expanding field of neuroscience, and it seems there are no guarantees as to exactly what the outcomes of our efforts will be, we have seen some encouraging signs since we started the CVI early intervention therapy. It is said that children who start at Level 1 on the CVI range scale (essentially no usable vision) can often progress to Level 7 out of 10 – a vast improvement in usable vision, with some children able to read independently and enjoy orientation and mobility benefits that come with improved vision. Josiah started at Level 1-2, but the signs of improvement we are already seeing definitely give us motivation to keep going. One story that might shine some light on what this looks like happened a couple of months ago. Having never really reacted to faces before or shown any real signs that he can see people around him, we noticed he started to say ‘see toothbrush’ when we presented it to him after mealtimes. So, my wife crept up on him at the dinner table and just positioned herself 45 degrees from his face, relatively close (but without casting a shadow) and after 20-30 seconds of moving his head around he locked on her, reached out his hand, fumbled slightly and then found her face while saying “see Mummy, I can see Mummy”.
This, combined with the steps he has taken in his walker without the harness, actually gaining control of his legs and putting one foot in front of another to step forward, have been amazing moments. We are so thankful to God for his progress… and we hope and pray we will see more!
We are aware that we are on a journey, and it’s not a sprint on a straight track with many available shortcuts at our disposal, but we are blessed to have the resources we have around us – including a wonderful team of physical therapists, medical specialists, family and friends who love, care for and support us as a family.
A full sentence. A profound truth. A hope for the future.
Both of my boys love to talk, and read. They are both doing really well with language. Josiah seems to have made up for his visual deficit by listening intently and learning to speak quite well for his age.
Interestingly, probably because of the regularity of reading Bible stories before bed as a family each night – which both boys enjoy and look forward to – one of the first full sentences Josiah learnt to say was “Jesus came back to life.”
I don’t recall intentionally teaching him to say this himself, but he picked it up and he says it fairly frequently when Jesus is mentioned in our home. There are many phrases he is still to learn that would be helpful for him to know, but I’ve got to say, I find it amazing that this particular simple sentence has jumped out to him so early on.
The cross of Christ is absolutely central to the Christian faith – that is where God, through the substitutionary sacrifice of his Son taking our place – dealt with the sin that separated us from him, putting sin to death through Jesus… but the work of God in saving sinners doesn’t end there. Jesus’ death puts to death that which causes death (sin), so that life, true and eternal life, can be ours through Him. For a detailed (and I mean detailed) treatment of this, see The Death of Death in the Death of Christ by John Owen.
For if we have been united with him in a death like his, we shall certainly be united with him in a resurrection like his. We know that our old self was crucified with him in order that the body of sin might be brought to nothing, so that we would no longer be enslaved to sin. For one who has died has been set free from sin. Now if we have died with Christ, we believe that we will also live with him. We know that Christ, being raised from the dead, will never die again; death no longer has dominion over him. For the death he died he died to sin, once for all, but the life he lives he lives to God. So you also must consider yourselves dead to sin and alive to God in Christ Jesus. Romans 6:5-11 ESV
The fact that Jesus rose or ‘came back to life’ as Josiah says, is a profound truth for all of us. It’s profound for unbelievers because it should force them to take seriously the claims Jesus made about His life and His work, and His call to repentance and faith in the only One who can guarantee life that cannot be destroyed eternally by sickness and evil and pain. There is so much talk of people wanting to live their best life now, but Jesus promises us a best life that goes on forever with Him and will far outweigh even the best this world has to offer. The promise of ‘your best life now’ rings all the more hollow when you put yourself in the shoes of a child who undergoes hours of therapy each week in an attempt to help them see basic objects that other children their age are more than familiar with, or to navigate their world though it appears a confusing kaleidoscope of information, with seemingly no visual rhyme or reason.
The resurrection of Jesus provides hope for the future, and I hope that as Josiah grows it will be something he holds on to – remembering the simple sentence ‘Jesus came back to life’. It is the resurrection that makes Jesus’ death an act of salvation (saving) from sin and a source of enduring and sure hope of eternal life for all who trust in Him, rather than just a tragically unjust crime perpetrated by a group of people against an innocent victim. It is the resurrection that gives us grounds for confidence that despite the difficulties we face in this life, we can have a true and lasting hope. This hope is for a better day, a better life, the best life – in the truest meaning of the phrase – a life we will live face to face with the creator of life, in his presence bodily, without ailments and disabilities and sickness and sadness and countless other results of sin.
Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5 ESV
I have recently been reading a book on suffering called Suffering and the Sovereignty of God, edited by John Piper and Justin Taylor. In it, Joni Eareckson Tada – a quadriplegic Christian woman who has been paralysed for forty years following a horrific diving accident – writes about how the hope of the resurrection raises us out of hopelessness caused by our present circumstances, because He delights in us (according to Psalm 18). She says, “I had prayed for God to help me. Little did I realize that God was parting heaven and earth, striking bolts of lightning, and thundering the foundations of the planet to reach down and rescue me because he delighted in me. He showed me in 2 Corinthians 1:9 that all this had happened so that I would “rely not on [myself] but on God who raises the dead.” And that’s all God was looking for. He wanted me to reckon myself dead-dead to sin-because if God can raise the dead, you’d better believe he could raise me out of my hopelessness.”
There’s something extremely powerful, comforting and hopelessness-shattering about knowing that God uses even our most painful weaknesses to show His glory, to cause us to rely on Him, and ultimately to work for our good. He can raise the dead – He raises spiritually dead sinners to life in Him (Ephesians 2), and he raises physically dead people who have died ‘in Christ’ to live with Him forever. I pray that as Josiah continues to grow and develop, and as he faces times of intense challenge and sometimes hopelessness along the way, that he (and all of us who are walking this journey with him) will remember that God has promised to one day raise us to new life with Him… and on that day it will become ever so clear that these light and momentary afflictions (in contrast to the beauty and perfection of eternity in His presence) have been working for us an eternal weight of glory – and that is the best life we will ever experience!
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Corinthians 4:16-18 ESV