I have had the pleasure of knowing Dave Bish for a number of years, and we once shared a long train journey where I talked for almost the entire time, while he graciously nodded. He is a Christian minister who leads from gentleness and love and other decidedly Jesusy qualities. He writes on leadership and community with honesty and wisdom. It is a pleasure to have him here today:
Ten past eight on the last Tuesday morning of January, my phone rang.
Half an hour earlier, I’d sent my wife and kids off to school. Normally I’d get up before they went but it’d been a bit chaotic so I was grabbing some breakfast, and about to go for a shower.
“I’m in an ambulance. Sam has had a massive seizure. Get to the hospital.”
Move. Phone a friend for a lift.
Twelve hours later, I collapse into the arm-chair, home from hospital to look after our eldest son. More seizures have happened to our toddler, and the terms “suspected meningitis” and “possible brain tumour” are ringing in my ears.
I cry. And phone my Mum.
On Wednesday we take him for the MRI. He’s anaesthetised and we’re sent out of the room.
We go for lunch in the hospital restaurant, and sit with two doctors from church who happen to be there. I’m too empty to speak.
We go to the chapel and I don’t have words to pray.
The tests come back clear. We don’t know what’s causing the seizures. This is good news because a known cause could be something really nasty. I don’t feel much better.
I decide that I’m going to include people in this. I’ll use Twitter and Facebook to share our experiences, and ask people to pray if they’re praying types. I feel pretty vulnerable, and faking that things aren’t like that seems like something I’ve not got the energy to do.
I make friends cry by posting a picture on Facebook of him wired up for an EEG.
Sam’s amused by it. But the picture feels scary.
My boy is 18 months old and has a scary word attached to him: Epilepsy.
Our consultant asks us what course of treatment we’d like to pursue. I have no idea.
We’ll see a lot of him in the coming months.
Four days later, I take my eldest to Gym Joey’s.
A friend there says they had a seminar at her work, in the NHS, about how all our problems are about not being loved as kids. Yeah, that explains my son’s illness. Thankfully, she wasn’t taken in by that rubbish either.
Well-meaning nurses say, at least it’s not worse. I think about the cancer kids – what can you say to them?
I’m in church that Sunday. What kind of week have you had?
I’m a charismatic. Weak and weary, I sing of the hope that I have. I get a picture of metal having fine detail engraved on it. That’s a painful sound. But a helpful image.
At a family party a month later, we’re told that our positivity will get us through. Were we not positive enough before to keep him healthy?
I need something that can account for brokenness under the skin of my 18-month-old’s head.
I need something that will help me as I grieve for the thought of my unblemished child, and the things I’d been planning to do this term go in the bin. We live day-to-day, nervous of every flinch and fall.
I was meant to speak on suffering at a university mission a week after this story began. That didn’t happen.
I’m thankful that I’ve known Tanya for a long time, and her blog has been part of my regular reading.
But I’m pretty numb.
Five good weeks follow, and then everything falls apart again.
Six weekends in a row, we’re in hospital as wave after wave of seizures hits.
He hits the floor in the middle of his four-year-old brother’s birthday party. (Along with ear infections and pneumonia.) My kid is taking a real beating.
His brother calls the seizures ‘fidgets’.
Every repeated journey down that corridor in the hospital towards Bramble Ward empties me again.
I’m starting to try to make sense of things by this point.
We change medication in late April, and basically he’s been stable since then. People ask how he is, and the truth is that most of the time he’s fine, but that’s how this works. Seconds before he falls he’ll be smirking and charging around. My boy isn’t fragile and quiet – he’s a stocky bundle of energy.
In May, I’m asked to speak on suffering at a CU and on Naomi’s story in Ruth 1 at church. Four good weeks mean I’m not as raw as I had been, and don’t break down in tears like I thought I might.
Things are more broken than I realised before. Suffering was something that happened to other people and wasn’t something I’d really engaged with emotionally before. I’m glad I read hard books on suffering beforehand.
I need something to believe that can cope with what’s happened and what will happen – not just briefly but long-term.
Karma had appealed to me before I was a Christian as a successful, healthy, prosperous teenager. But the philosophy of karma sucks when stuff like this happens.
Epilepsy is a chronic thing. Maybe it’ll go away, because sometimes epilepsy does. But our boy is on medication for at least the next two years, and for a two-year-old that’s a long time.
At this stage, I suspect he’s pretty oblivious, but it’s exhausted us, physically and more so emotionally.
Friends have helped hugely. They’ve fed us, given us cash to pay for the ready-meals and hospital car parking, arranged a weekend break for us, done our washing. They’ve just been there, and not tried to fix us.
If I tried to make sense of it from where I sit, I guess I might think God isn’t there, or is against me. I’m not sure where I’d be if I had to do that. I don’t have the strength for positivity.
Brené Brown and Francis Spufford have helped me get past glossy, trite answers. There’s a different vantage point where I can look with Jesus, through bleary eyes, with the God who was bruised and broken, with and for me.
I have a God who gets it.
And He will finally renew what’s broken.
Dave Bish is married and has three sons under the age of five. He spends his days travelling the South West of England helping University students hear about Jesus with the UCCF. He’s been attempting to follow Jesus since he was eighteen. In his spare moments enjoys social media and the works of the affectionate puritans. He tweets here and blogs at TheBlueFish.org
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