As a child, I used to love having fun in our garden with my magnifying glass, focussing the sun’s rays on all sorts of things – dry leaves, fire crackers, patches of grass – and watching the sometimes fiery effect. Drawing all that light and heat, directing it onto one spot, was enormous fun for a curious, if not somewhat mischievous, ten year old boy.
Whilst last Thursday wasn’t what I would call great fun, it was a day that did see us at times smiling and laughing. But it was a day that felt like lots of events were being focussed into a magnifying glass and concentrated into one place, one day. As well as it being the first anniversary of Ben’s death, it was Joshua’s 19th birthday and the day for receiving results from my latest PET scan of the previous week. Time gently propelled us from one event to another through the day. A walk mid-morning near Broadclyst with my parents-in-law to the spot where, on the 27th December 2014, Ben suffered the seizure that led to his four month hospitalisation, was followed by a family pub lunch. Onwards then we went, in the early afternoon, to the hospital for my results followed by a visit to Mardon House, Ben’s home for his last 3 months, to leave some memorial flowers. Lyn, Bernard and the staff welcomed us so warmly and as we sat over a cup of tea with them, so many recalled how special Ben had become to them while he was there and how they still remembered him so fondly. We were able to spend a few quiet moments alone in his old room at Mardon – and in the space where he breathed his last breath – and let some tears fall.
After a visit to his grave to lay flowers, we managed to affect a change of gear and the day concluded with a good evening around the meal table with some close friends of Joshua joining us to celebrate his special day.
At the end of it all, we were tired, somewhat relieved, but thankful to Father for the way we’d been held. We felt the day had been marked suitably and that we’d done well. The fact that my scan results were generally positive helped matters enormously for us all. Using the very obvious tumour on my neck as a ‘marker’, it seems that there was an initial general shrinkage in most tumours in response to the Dabrafenib capsules over the weeks since February, but now the drug has started to loose its effect and there’s been an expansion again over the last two or three weeks. The result is that they all appear to be increasing again to their original sizes. Consequently, the scan showed everything more or less as it was on the previous one in January. The good news however is that there’s no evidence of anything new, and what tumours there are don’t currently appear in any life-threatening places. I’m now scheduled to start my new immunotherapy treatment on Friday 13th May. Although the new three weekly infusion of Pembrolizumab will mean careful event scheduling in our family diary – time away, holidays etc – I certainly won’t miss the current twice daily timetable of swallowing capsules as it’s limited when I could and couldn’t eat.
Ten days ago, Catherine and I were able to attend a day in Worcester for bereaved parents organised by the superb UK Christian charity, Care for the Family. It was a heartening experience to be sitting together with others, all of whom were parents who’d lost a child – some in childhood, some as adults, some specifically to suicide. Sharing together in our smaller groups through the day, there was an unspoken understanding from all to each of the journey we’re together on. As Mike and Kath Coulson, leaders of Care for the Family’s Bereaved Parent Support spoke, they helpfully named something we’ve experienced both since my diagnosis and Ben’s death – hurdles and tripwires. The hurdles are the events you can plan for – anniversaries, Christmas, birthdays – times you know are coming and which you know will probably be difficult, but strangely can be relatively alright as you’ve braced for them. It’s the tripwires however you can’t plan for…they’re the problem. They’re the ones you can’t anticipate. A smell. A sight. A piece of music. A place. A word. And suddenly a strong memory appears and grief just catches you out again. For Catherine a few weeks ago, it was seeing a small boy wearing dungarees. She remembered four small Clark boys, including Ben, wearing them. She was so unexpectedly tripped up. And no one would necessarily know.
We’re looking forward to the continuing get-togethers with these precious folk…it was so timely ahead of last Thursday’s anniversary. As we returned home to Devon that evening, we called in – invited – to Sam and Kirsty’s wedding reception in Nailsea. Sam had been one of Ben’s best men, and Ben would have been one of Sam’s. It was so great to be there to see them both. Sam had been such a loyal, close friend over many years. But I had to catch myself and swallow hard at one point as I saw a few of Ben’s old friends – many now married – and thought, “Ben and Dabi should have been here today. Why, Lord, why?” As I’m writing this now, my jaw is clamping and tears are forming. Tripwire moments. And if it’s me, it’a also numerous others in their losses…especially I think of the number of lovely people we met last Sunday when we spoke at Christ Church, Woodbury who’d lost children. It was a privilege to have them share with us afterwards and know a quiet understanding between us. But I also think of special family friend Carol, whose husband Neville, my godfather, died suddenly very recently. I particularly remember conversations out over coffee with him on my visits back to New Zealand over the years. I shall miss him.
As Catherine and I sat with our good friends Matt and Louise Wilcox over breakfast last Saturday morning, having had them stay over with us the night before, we all read from the second chapter of John’s gospel in the Bible the account of Jesus at a wedding in Cana where he turned water into wine. As we pondered it, Matt remarked how noticeable it was that Mary, Jesus’ mother, when they ran out of wine, simply turned to him and said, “They have no more wine”. After what seems like a rebuff from her son in response, she quietly turns to the servants and says, “Do whatever he tells you”. And what follows is a sign that points to His identity.
But why the initial word from her to Jesus? Matt helpfully highlighted the sense in which it seems Mary knew. She knew whatever the situation, Jesus was bigger than it. For a couple getting married, Jesus saved them from the social shame and stigma within their culture of a ruined wedding party. But more than that, there’s no situation, no loss, no lack, no grief, no nothing that ever catches Him out and leaves Him incapable to help, to be alongside us even when it seems to be in the darkest place, to give solace, hope, to transform, to forgive, to renew, to be what we need Him – Emmanuel, God with us – to be.
He’s our continuing strength – our life.