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…

My wife had noticed something I hadn’t during the scan – a head circumference graph that seemed to show a fairly rapid increase in size since the last scan. The sonographer confirmed that was what caught her attention and she sent us home with instructions to see a doctor as soon as possible. Needless to say my wife and I couldn’t wait for the doctor to call us, so we phoned ahead and booked an appointment, hoping to have our minds put at ease. They weren’t. My wife’s doctor was not working that day, so we spoke to another doctor. He said he wasn’t in paediatrics at the moment, but he believed the problem to be a condition called hydrocephalus – a build up of fluid in the brain, putting pressure on the brain tissue and bringing a whole raft of potential outcomes and effects. That was about all he could tell us (which seemed like more than enough to process anyway), and he referred us to the head of the high risk pregnancy unit at a specialist hospital for women and children.

It was an emotional 24 hours, to say the least. How quickly things can change! We went from thinking everything was normal, which it had been at previous scans, to finding out our child may not survive, may have some degree of damage to its brain or may live a relatively normal life if surgery post-birth is successful and the if fluid hasn’t already caused significant damage. Our initial reaction was shock, then sadness, then worry, or perhaps all three at once. We cried. We went over it a bunch of times trying to process the news. We wrestled with it. We told our families. We cried some more. I got one of those headaches you get when you’ve been shedding tears and your head is telling you to stop. We prayed a lot, and we made a conscious effort to hand it over to God, firmly believing that he is good, that he is sovereign, and that he is in control even when we are not.

The following day we went to the hospital for another scan and an MRI. We had another ultrasound and the doctor basically said, “This is serious – I can’t give you many answers yet other than to confirm that it is hydrocephalus.” I remember trying to get my head around the different types of causes and potential outcomes. I remember asking if there was any good news. The good news is he didn’t think it was genetic and it was definitely not present at the 20 week scan, so it was something that had developed relatively recently rather than being present from the beginning. I remember thinking that if fluid was constantly building and creating pressure on the brain, maybe we should get the baby out sooner via caesarean and relieve the pressure through surgery, but his advice was that we should wait to ensure the lungs were able to cope as best as possible with exposure to the outside world. I must admit I didn’t leave his office feeling relieved about much at all, other than to know we had the top people on the job. We spent the rest of the day getting blood tests to rule out various causes and an MRI to see more clearly what was going on. It was long, tiring and worrying.

The following day we got a call from the doctor to say that the MRI revealed the hydrocephalus was caused by a bleed in the brain. After sufficiently freaking myself out with terrible prognoses by Googling ‘brain bleed hydrocephalus’, we again placed it in God’s hands. There was (is) nothing else we could (can) do. An appointment the following week revealed the bleed was category four – the most severe, and a neonatologist explained that what can happen is an area that is flooded by blood during brain development can stop growing, forming gaps where brain matter would normally be present. More possible outcomes were discussed across a spectrum from terrifying to less terrifying, but the constant message was ‘this is serious and it’s too early to talk specifics.’ We went home, we kept praying and we’ve been blessed to have many others praying too.

That brings us to Thursday. We met with another doctor and asked a few more questions. She checked the baby’s heart beat. Strong. We visited the neonatal intensive care unit (NICU) and we organised an appointment to see the neurosurgeons, since brain surgery is the only treatment option (medically speaking).

2. Where the Rubber Meets the Road

Since the original shock and during the process of coming to terms with this news, I’ve noticed a bunch of different thoughts running through my mind, thoughts about how to respond, about how to take it one day at a time when all you want to do is fix the problem now, about how best to pray despite the tension of knowing God can heal but that he doesn’t always choose to heal physically in this life, about what I know to be true of the God who knits us all together in the womb (Psalm 139) and how that meshes with what I experience in the dark moments when the road ahead seems so heavy, scary and potentially far from what I had imagined life to be like for our family.

I know and am returning constantly to this truth from Romans 8:28 as my source of rest, that “for those who love God all things work together for good, for those who are called according to His purpose.”

To believe that means believing, as I do, that God is in control of every situation, including this one. There are no maverick molecules in his universe, as R.C Sproul said. He isn’t a helpless bystander. He isn’t distracted, neglectful or mean. He doesn’t take joy in our sufferings as parents whose hearts ache at our powerlessness to help this little image bearer of God while it is in the womb, or in the suffering of the baby itself, but he is sovereign over it and he is good, all the time. He knows about it. It isn’t his plan B. God doesn’t make mistakes. He is intimately involved in our lives, working all things for our good and for his glory, and yet he doesn’t promise any of us an easy ride. Jesus knows what it means to suffer. God the Father knows what it is like to watch a child suffer. These truths are comforting, reminding me that God is not distant or disconnected. He gets it. He’s got us, and he’s got this situation in his hand.

I believe God heals today, and we are certainly praying for miraculous healing, placing our faith and trust in God who cares so much for his creatures that not even a bird dies without him knowing about it (Matthew 10:29-31). I can hear my Pentecostal/Charismatic friends telling me that if you have faith and tell a mountain to move, it will move, and that God doesn’t give bad gifts to his children. I agree as God’s children who have been adopted into his family, that we are called to be obedient in trusting God and we are told to pray for the sick (James 5:14-15). I agree God doesn’t delight in seeing his people suffer, but I also know from scripture that nothing that happens is outside of God’s decree and so this is no random act of chance. It is something God has allowed, and it is something God will use, somehow, for his good purposes. I’m reminded of the book of Job where in Chapter 1 Satan speaks to God and says,

“Does Job fear God for no reason? Have you not put a hedge around him and his house and all that he has on every side. You have blessed the work of his hands, and his possessions have increased in the land. But stretch out your hand and touch all that he has, and he will curse you to your face.”

Satan accused God of making Job’s life too easy so that he would have every reason to trust him. God responds by saying “Behold, all that he has is in your hand. Only against him do not stretch out your hand.” Then Satan takes Job’s property from him and all his children are tragically killed. Even when Satan attacks us, those attacks are not outside of God’s control. This is a huge brain shift for those of us that fall into the trap of thinking God’s primary job is to carry us through life unscathed. Satan can only act within certain boundaries. It is God who writes the big story of his-story in which we all play a part. Satan is not the ultimate power in the battle, and he does not control the final outcome.

Job’s response is what really strikes me. Verse 20 and following says, “Then Job arose and tore his robe and shaved his head and fell on the ground and worshiped. And he said, “Naked I came from my mother’s womb, and naked shall I return. The LORD gave and the LORD has taken away; blessed be the name of the LORD. In all this Job did not sin or charge God with wrong.”

So there is a way to be honest with God, to be deeply sad when we experience loss and pain that seem too much to bear, and yet to glorify God for who He is, for his unchangeable goodness, his love, his care, his power and his holiness even when we can’t see clearly the reason why he sometimes gives and other times ‘takes away’. I can’t see in full focus right now, but from what I know about God from his Word and (to a less reliable degree) my experience, especially these last few weeks as we have wrestled with this news, I am assured that God has a purpose in suffering, not just generally, but particularly – even in this specific situation. There is a reason why this is happening. There is a purpose in this, even if we can’t see it now… even if we never see it on this side of heaven. I may not understand it now, though I hope I will in time. God is not capricious. He is not mean. He is love and he is good – all the time. We can rely on Him. We can pray for healing and we can rest in the knowledge that whether physical healing is granted in this life or not, He is still good and He will still work all things for our good and for His glory.

The Bible talks about benefits of suffering. It refines us (Isaiah 48:10), it produces endurance which leads to character and an unshakeable hope (Romans 5:3-5), and it causes us to rely on God’s grace, boasting only in Jesus, drawing close to him constantly in prayer, and receiving his strength when we lack the strength to face the road ahead ourselves.

“My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”
(2 Corinthians 12:9-10)

It also talks about contentment in all circumstances (Philippians 4:11-13). Already I can see that God has been using our suffering, our sadness and our helplessness to draw us closer to himself – to cause us to rely on and rest in his love for us and for our baby. It’s not trite. We are aware of the severity. Our hearts break at the thought that our baby has experienced pain in the womb which we were unable to prevent and that the road ahead is full of so many unknowns, with many potentially scary outcomes. We do pray for healing, and we trust and draw comfort from the fact that whether the healing comes in this life or the next, God is with us, he is with this child and His good, pleasing and perfect will will be done.

I’m reminded, as my wife and I approach the road ahead one day at a time – doing our best to make the rubber meet the road by trusting and leaning on God – that death, decay and other effects of the fall are things all of us face in this life. We are not promised health, wealth and earthly prosperity throughout our time on earth, in fact death comes to us all at some stage. We are told to treasure the giver who is eternal, not the gifts which are temporal (Matthew 6:19-20). We are not to cling to the idea that this life is the best life there is for us. Instead, earthly suffering points us to a much greater life, one that cannot be tainted by sin, suffering, sickness, sadness, Satan, sorrow or any other bad thing.

We hope and pray for the best possible outcome for this little life, this unique gift from God whom we will meet and love and welcome into our family in a matter of weeks, and we look ahead to the time when all suffering, including death, will be put under Jesus’ feet with the rest of his enemies and we will live with him coram Deo, face to face, safe from all harm.

Romans 8:18 says, “For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us…” and 2 Corinthians 4:17-18 says, “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.”

We don’t have many answers from the doctors at this stage. I know I don’t feel like I have that many answers for how to approach the days ahead, but the only ones I do have involve relying on God’s strength to bear the weight of our weakness, and that’s the best thing we can do. In all things, my desire is that as a family we will place our circumstances, good or bad, in God’s sovereign care. As hard as it is at times, and with great joy at other times, we will say no matter what comes our way, whether through tears of sorrow or joy: God is enough, He is good and ‘it is well with my soul’.

Some books I’ve found helpful in recent days and weeks on the topic of suffering and the Christian life include:

• The Scars that Have Shaped Me: How Goes Meets Us in Suffering by Vaneetha Rendall Risner (I can’t recommend this book highly enough).
• Be Still, My Soul (25 Classic and Contemporary Readings on the Problem of Pain): Embracing God’s Purpose and Provision in Suffering – edited by Nancy Guthrie.
• God’s Grace in Your Suffering by David Powlison.