Today is my youngest son Josiah’s third birthday. Recently, my older son, Asher, turned five. For me at 35, my birthday is not super significant. It’s a good milestone each year, and a chance to celebrate with those I love, but it doesn’t hit for me the same way as my kids’ birthdays. I imagine there’s a certain amount of reflection that is unavoidable as a parent celebrating your child’s birthday, and when your child’s health journey is, shall we say, less than straightforward, it feels like this is amplified even further. Just last week we had one of those moments where everything sort of pauses or slows down temporarily due to a health scare, as we wait to find out what is wrong below the surface, what can be done, how quickly and what the outcome will be. Thankfully, this time was a minor one, but more on that later.
This reflection is healthy, I think, and worthwhile, but has its challenges too – but first, an update…
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.
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…
In arguably his most famous play, Shakespeare’s female protagonist asks a well known question about the substance of a name;
“What’s in a name? That which we call a rose
By any other name would smell as sweet.”
I haven’t really thought about this until now, but Shakespeare is like the king of the English language (other authors come and go but Shakespeare will seemingly forever be studied by English students) and yet in this very famous scene the character wants to disregard the word (in this case a surname) as a means of describing the idea or person that it represents. This of course goes against the grain of history in which names carried authority, tradition, and identity.
Similarly, 19th Century Danish Philosopher Soren Kierkegaard is quoted as saying
“Once you label me you negate me.“
Now without getting into a full blown discussion on post-modernity, relativism, ‘progressive social norms’ and ‘subjective reality’ (I know, this sounds like an oxymoron, but I’ll leave that for later), I have to say both men were ahead of their time with the notion of wanting to strip words of their definitive meaning, instead freeing up concepts, ideas and even identities to remain undefined and unrestricted. However, I also think this notion is, at times, extremely unhelpful.