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.
With the world in what seems like an unprecedented level of turmoil thanks to a threat that in and of itself knows no cultural or geographical limits, I’ve found myself asking, as many of us probably have, where do I fit in this situation, what do I think about it, what can I do about it, and how should I interpret these events in light of my beliefs and convictions? It raises existential questions about living vs existing, about mistakes made by the human race, and about the nature of God and how He relates to us as creatures living in His world… and by extension how we should relate to Him, especially in times of trouble. Through all the negative news reports, the empty supermarket shelves, the toilet paper shortages (Australians are crazy for toilet paper now, and it makes little sense as to why), the heightened societal anxiety, the media hype, the talk of ‘herd immunity’ and vaccines and lengthy time frames, the talk of ‘flattening the curve’ with good hygiene and social distancing – what has stuck out to me most prominently is that we as humans do not like one thing in particular… there is one thing we will do our absolute best to avoid before collectively freaking out when we realise our best isn’t good enough and it’s unavoidable: the reality that you and I are not in control of our lives, at least not in an ultimate sense.
I’ll be honest, the whole ‘New Years’ thing is tiresome to me in some ways. I know what you’re probably thinking – “of course you’re tired, it’s straight after Christmas and almost everyone is tired after Christmas”, but I mean more than that, at least, I think I do…
A year ago today I…
A year ago today I had just been through one of the most stressful experiences of my life.
A year ago today I was sitting in a hospital room with my wife, talking about our new baby boy and deciding on his name.
A year ago today I was leaving that same hospital room periodically to check on my brand new baby in the Special Care Baby Unit, hoping his oxygen levels would stabilise, and that the raft of negative outcomes and worst case scenarios we’d been asked to prepare for would not eventuate.
As the 7th of June approaches, my wife and I prepare to celebrate the birthday of our second son. He is a beautiful, mostly happy baby who is gradually learning to interact with a world that he isn’t really able to see as a result of damage to his visual cortex from a Grade IV intra-ventricular haemorrhage… and yet he still finds joy. Over the last twelve months I’ve learned a lot, and I’ve written a lot – from the shock of discovering his medical condition through the stages of processing what it all meant and receiving updates from various doctors, through two brain surgeries and three fluid taps to the confirmation of cerebral palsy on his left side and the likelihood that his vision is very low, if it is there at all – through all of this the (active) sovereignty of God really has been, as Charles Spurgeon put it, ‘the pillow on which the Christian rests their head’. Until now though, I haven’t written about something else that happened on the day our son was born. In some ways it was small, it probably only lasted 30 seconds, and yet it is burned into my brain and still boggles my mind. It was something one of the midwives said while we were waiting to go to theatre… but more on that soon…
“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.
You know that saying, ‘life is a roller coaster’? There’s no denying it’s true, but I’ve got to admit that nothing has caused it to feel more accurate than watching my baby son go through frequent medical ups and downs while I am powerless to stop it. Sure, life is never perfect, but compared to these last few months I feel like much of life has been more of a gradual trek up and down various hills and valleys rather than a white knuckle ride with danger around every corner. Those who have been tracking with my recent posts will have read about our family’s journey through my infant son’s initial diagnosis in the womb with a severe brain bleed and resulting hydrocephalus (extra fluid build up in the brain causing potentially dangerous pressure increases with many and varied possible outcomes, both short and long term) and our joyful relief tinged with some ongoing trepidation about the future when we were able to bring him home from the hospital, continuing to pray for healing as we sought to ‘ask boldly and surrender completely’. Now, two and a half months down the track, it’s time for an update.
Have you ever experienced a miracle? I believe I have, and two days ago my wife and I brought him home from the hospital, praise God! After an ultrasound at 32 weeks revealed two serious issues in our unborn baby’s brain, which doctors were powerless to do anything about until he arrived, our world was in many ways turned upside down as a whole swathe of possible outcomes presented by neonatologists and neurosurgeons bounced around in our heads. You can read more about that stage of our journey here, as we sought to depend on God to get us through, but I’d be lying if I said the prognosis didn’t make the last few weeks of our pregnancy quite different to the unrestrained excitement we’d experienced with our first pregnancy.
Thursday the 7th of June 2018 (37 weeks and 5 days) was the day we were to meet our new baby via caesarean, which had been arranged due to the fact that the swelling in the brain was causing the head circumference to measure over the 99th percentile making natural birth dangerous as contractions would put too much pressure on the brain. At 3.19pm, a baby boy – a brother to our first son, Asher – entered our family, causing us to simultaneously give thanks to God while buckling up for one of the most intense weeks of our lives. The obstetricians and neonatologists had prepared us for the fact that the baby may need to be rushed to neonatal intensive care, would likely need help feeding and need to be fed via syringe, may have a visibly disproportionate head and could have a number of other complications, with the possibility of further symptoms developing down the track. There were between 15 and 20 people in the operating theatre… not exactly a reassuring sign, but they all played their role and we were relieved to hear the first cry as this little life entered the world outside the womb.
1. How Quickly Things Can Change
On Thursday I sat in a small room in a large hospital… again… waiting to hear some good news from the doctors, waiting for some answers, waiting to find out what they can do to help (and when), waiting to see what God will do in this situation and how He will use it for our good and for his glory. Before I go any further forward, I suppose I should go back a couple of weeks… It’s Sunday night. This time the previous week I had been sitting down with my wife, preparing for work to get busy again after a short holiday break, and just generally enjoying the stage of life we’re in with an almost two year old filling our days with joy and another little one on the way.
On Tuesday, we were to attend our final ultrasound before the next baby is born. The scan was booked for 32 weeks for a fairly routine check-up. I was excited to see our little baby for the second time. After attending the first scan I had missed the second scan, so I was keen to see how it had grown. The scan was going fine, we thought, and then the sonographer said she needed to get some extra paperwork. At this point my wife and I didn’t think much of her exit from the room, and I even (perhaps naively) thought the 15-20 minute wait until she returned was nothing to worry about. You just kind of assume things will go alright, well, at least that’s what I assumed. When she returned though, my wife and I heard words you never want to hear as expectant parents during an ultrasound; “I’ve noticed some things that I think you need to speak to a doctor about.” I remember sitting there thinking: hang on, this pregnancy has been quite smooth, the baby has been healthy all the way along, what could possibly be wrong all of a sudden? When I tried to ask for specifics, I was told “I think you really need to speak to someone who is trained to talk to you about this.” So it began…
Today is Good Friday. Yesterday I attended a Maundy Thursday service and as the pastor began his welcome and call to worship he touched on the unusual name we give this day – ‘Good Friday’. It seems that what it commemorates is something so brutal that ‘good’ almost feels like the wrong descriptor, and yet we know that for those whose faith is in Christ and his sacrifice on the cross some 2000 years ago, the outcome of Good Friday is most certainly good. Jesus’s death on Good Friday was one of two central defining moments in God’s salvation plan to redeem his people from bondage to sin and death and transferred us into his Kingdom, laying our sin on Jesus, forgiving us by grace through faith in Him and adopting us as His own.
He has delivered us from the domain of darkness and transferred us to the kingdom of his beloved Son, in whom we have redemption, the forgiveness of sins.
Colossians 1:13-14 (ESV)
The pastor said something like “It might seem strange that we call it Good Friday, in fact you might even wonder why we don’t call it Bad Friday…” He went on to explain the good that came from it, which is obviously the most wonderful truth to behold, but it seems to me there are a number of helpful words to use in front of the word ‘Friday’ – words that might help us to approach the commemoration of Jesus’ death with appropriate wonder, awe, grief, humility, joy and thankfulness.