Within our family, the news on Ben which we are painfully trying to come to terms with, is that he may have what the consultant describes as a ‘progressive brain disease’. Much remains a mystery to the medical team at the moment as we face a grueling wait for the return of various test results – some 2-3 weeks.
We continue to keep a vigil at Ben’s bedside in the ICU during visiting hours. Whilst he is described as ‘stable’, he has developed pneumonia due to his ventilator, and so with the resultant involuntary coughing, to keep him free of distress because of the tubes in his mouth, the medical team are keeping him heavily sedated in what is in effect an induced coma. Yesterday – New Year’s Eve – he underwent an MRI scan to further investigate what’s happening in his brain and to help assist in discovering what’s behind all this. The result has indicted that he has encephalitis, that his brain is swollen. But the cause is unknown.
All of us – Dabi, Catherine and I, Simeon, Tom, Josh and Lydia – are doing OK in the circumstances, albeit going about life somewhat mechanically. We wrestle with what information we have been given, but hold onto what light is contained in the words the consultant used when he said ‘we think he has a progressive brain disease which may or may not be treatable’.
It seems a strange thing to have become so relatively accustomed to sitting on the chemotherapy ward for my treatment, now to find ourselves sitting alongside other families in the ICU Visitors Lounge, waiting to see their precious ones also in the unit. We know that the next 2-3 weeks will be one of ongoing waiting. But beyond that, the path ahead for Ben seems too deep and difficult to comprehend – for him, for Dabi – both married just 17 months – for all of us…to say nothing of its intersection with my health and prognosis. My ‘switch’ gets thrown every once and a while either through tiredness or something particular happening. When I found Josh sitting in the living room, strumming his guitar, with tears in his eyes, it caused a reaction. He’s been learning to live with my melanoma prognosis, and now he’s had his brother’s news. I sat down next to him, arm around him. I did the only thing I could do. I prayed with him, feeling my eyes welling too. Then, as I have sat in church quietly alone over the last few days, even lying prostrate on the floor, I find words both easy and hard. “Too much, Lord” is one breath; “Father, I trust you through all this”, another. “Hide not your face from me in the day of my distress”, from the Psalms, yet another. But through it all, I’m reminded of the words of scripture –
“Faith is the assurance of things hoped for, the conviction of things not seen”
As Father has been over these last few weeks and months through my diagnosis, so He is now. The arrival of painful times doesn’t make Him any less God than He’s always been. Hardship was never something He promised His family would avoid. Grace is what He promised to take us through. Precious, sweet amazing grace. Sufficient for each moment as was daily manna in the desert for the Israelites. And Ben affirmed so much of his own confidence in Christ as he wrote here on the blog a few weeks ago.
One of Ben’s favourite hymns is one he and Dabi had at their wedding. I reckon it says much for the present moment.