THE children’s book and action game We’re Going on a Bear Hunt takes you on a journey on which you encounter various hazards on an imaginary hunt. At each hazard — say, a river or a swamp — you chant: “Can’t get over it, can’t get round it, can’t get under it, got to go through it!”
Life with our first son, Benjamin, was like that. For seven years, we encountered a series of daunting hazards, and, despite desperately searching for ways around or over them, we had to get through them.
We had been married for three years when he was born. We both believed in God, although mine was largely a hand-me-down faith. I didn’t like God very much, but felt that I had no choice but to believe in him. Sue had discovered God afresh, as it were, aided by the prayers of a devout grandmother.
Ben was a beautiful baby, weighing in at a healthy 9 lb 2 oz. His birth was long, requiring a forceps delivery. On the card announcing Ben’s birth, I wrote: “A precious gift from a loving heavenly Father.” Our euphoria didn’t last very long. We couldn’t seem to connect with Ben, or stop him crying. Finally, one day he cried non-stop for 21 hours, and then had an epileptic fit.
Reeling from the shock, we spent days, weeks, months in hospital — locally at first, and then in Great Ormond Street, London — as doctors tried to discover what was wrong. Eventually, they diagnosed antenatal CMV (Cytomegalovirus): lethal to unborn babies, though harmless after birth. Ben had no control of the motors in his brain; the doctors could try only to hit on the right combination of drugs to limit the number of daily epileptic fits that he suffered — and tell us that his life expectancy was short.
We emerged from those months in a daze, with just our love for Ben to hold us together. Our plans for the future were put on hold as we devoted ourselves to caring for him. But these were the days of the Charismatic revival: Christians were rediscovering the power of the Holy Spirit. People — not just Pentecostals — were speaking in tongues, expecting healing, witnessing miracles. Surely there must be hope for Ben?
We jumped on the bandwagon and experienced for ourselves the baptism of the Holy Spirit, and the fresh life, expectation, and hope that followed. We went to healing meetings; attended conferences; prayed with friends; watched Ben anxiously for signs of improvement; despaired; shouted at God; blamed ourselves; threw our Bibles away; crawled back to God; gave up; gave in.
It was a rollercoaster ride, to heaven and hell. The lowest moment came when one speaker at a conference told me that, if we didn’t experience healing, it was simply because we had no faith.
Throughout, friends and family supported us, prayed with us, helped out, brought gifts, and dropped in unexpectedly when we were at the end of our tether. One unlikely friend travelled 150 miles to tell me that Ben was not our fault.
Other well-meaning friends raised our hopes with “words” that they believed were from God. They didn’t work; nor did any of the useful promises in the Bible. We tried clinging on to them, only to have to let go, disappointed. The one verse that stayed with us all the way was: “As for God, his way is perfect” (Psalm 18.30). What did it mean? It seemed like a rock too far, too high.
BY THE time Ben was six years old, we had been blessed with two more children, neither disabled, despite our fears. With the added demands and joys of caring for them, we simply couldn’t give Ben the care that he needed any more. After resisting fiercely for some time, we faced the nightmare of having to let him go. The first time we took him for respite care, we drove round the corner after leaving him and burst into tears. Eventually, we found a permanent home for him, and had to make do with having him home for some weekends.
As I drove him back to the home on what turned out to be the last of these visits, he sat beside me in his special chair. He seemed to be listening as I told him through my tears that I couldn’t see the point of him living any more in such suffering. I had reached the place — which Sue had reached earlier — of finally being willing to let him go, and hoped that he understood.
A week later, early in the morning, we got the dreaded phone call: Ben had died in his sleep. The next few days passed in a blur. Waves of grief. Glimpses of the sun in encouraging words from friends. Relief. Tears. Regrets. Numbness. Memories. Holding ourselves together at his funeral. Laying his small coffin to rest. Remembering how he used to recognise our voices. Comforting our daughter, who asked me: “Was it my fault that Ben died?”
That was nearly 40 years ago. Since then, we have been greatly blessed, seeing our son and daughter flourish, marry, and have children. We, too, had an unexpected adventure: in our retirement, we became members of the resurrected community at Scargill for seven rewarding years.
Our marriage survived the storm, and we’re still with God, much closer than before. Sue’s testimony is that those years with Ben changed her: she began to know herself — and God — much better. I find it harder to quantify what happened to me, although I do know I wouldn’t be without those years. Had Ben been dramatically healed, I can well imagine I would have been insufferable. I do still believe that God can heal, but I shrink from pompous claims of knowing what God says, or what he will do.
Jesus did work miracles, and, as far as we know, never turned down any requests for healing; but, for himself, he refused to escape the horror of the cross. Peter and the other disciples witnessed miracles and performed them, but many of them also died painful deaths. Today, all over the world, believers are being persecuted, imprisoned, tortured, killed. In that context, my rage at God for not healing Ben seems pitiful. And it does appear that the only way with some suffering is through it.
I LOVE Job for his daring to ask God, “Why?” Paul says that his sufferings help not only him but, in some mysterious way, others, too (2 Corinthians 1.4-6). One thing that I do know about Ben is that, despite suffering so much, he called forth love in us and in many others. It was, after all, the only thing we could give him.
Our natural human desire to avoid suffering plays into the hands of those who twist scripture and preach a prosperity gospel, or universal healing for all and everything. I prefer to join those who share together in the mystery of suffering and help each other along.
Which brings me back to the bear hunt. When you eventually meet the bear, your bravado fizzles out, and you run for your life. When we reach our journey’s end, we won’t need to turn and run for our lives: I think we’ll just fall into God’s embrace.
Patrick Baker is a writer, and former member of the Scargill Community.