I put down the phone and brought my fist to my mouth, suppressing the short sounds trying to escape, stomach clenching as each rapid cough dammed tears already dewing my eyes. I reminded myself that as the chief executive (all business-like and busy, about to go into an important Board meeting), I needed to check some of the emotion I was feeling, so that I could at least speak through the rasps threatening my throat. There was I, sitting at this moment behind a closed door in front of a computer in a comfortable chair in a pleasant office (albeit furnished with ‘pre-loved’ pieces – we may have had many referrals to our services, but funding didn’t follow and we had to cut our cloth accordingly). I had been feeling anxious and, to be honest, low about the meeting, as amongst other bits of unpleasant news I would report that cash flow wasn’t great. No surprises there. But this phone call had tugged at that ‘feeling sorry for myself today’ string at the top of my head and pulled me up, reminding me about why we were here. I couldn’t wait to tell the Board members: “This is why you give your time and expertise voluntarily to help us.”
The couple on the phone had come to us a couple of months ago seeking help. And hope. We had to be honest: no promises, no miracles on offer.
What we could do was to promote a practical, self-help approach: a tailored programme of therapies as for other families: where their brain-injured child didn’t know it was their birthday. Where giving a hug got no response. Where looking into their eyes saw no connection. Where their child might scream for no apparent reason; or where there might forever be the pain of waiting for their child to say, ‘I love you’ for the first time. Children unable to reach for a toy and parents wondering if their child would reach adulthood without ever learning to play.
Working in an environment where we sought to provide a lifeline (as families so often described it), and where they could be comforted by a blanket of hope and optimism, not overwhelmed by despair, even our most experienced therapists had privately expressed concern: “We’re not sure that we can make any difference to Rory. His is one of the worst cases we have ever had referred to us.”
Yet with the calmness, dedication and determination which in all the years in which I had the privilege to work with them never waned, the therapy staff accepted the challenge. A full three-day baseline assessment was carried out; a therapy programme for the family members to undertake at home was created; the parents were taught what they could do with and for their son to try and stimulate him. Emotional and practical support for the family was there in abundance, and the parents had left us armed with new knowledge and practical sensory and motor activities to carry out at home. It was to consume a huge amount of their time for months – maybe years – to come. They weren’t complaining about the care and help they had already received. “We have great facilities nearby. But Rory can only visit once a week and they can only provide respite one day a month. We’re lucky – that’s more than some others get. But we feel we should be doing something to help him every day. We know he’s never going to live the life we expected, and we don’t know how long he’ll be with us. But he’s our son. We want him to maximise his potential – whatever that may be.”
I could empathise with our families. I could sympathise, though this was not what they were seeking. They already had that. What they wanted, in lieu of a miracle, was to make a difference. After all, we dream about what sort of future our children may have. During the pregnancy we speculate about their sex; their appearance; which of our talents or traits they will inherit; what future career they may choose. Brain surgeon or emptying bins? “Oh,” we say airily, “it really doesn’t matter, as long as they are healthy and happy.” We leap light years ahead and dream about their wedding and us becoming grandparents. “Don’t want that to happen too early though,” we say, chuckling. What we don’t think about is a future with a child who may never be independent, or who may require us to care for them all of their – or our – lives, or who may have profound physical and mental difficulties. We don’t imagine a life of despair, exhaustion or isolation. It’s not what we plan for, nor what we dream about. It’s not what we expect and it’s not what we want.
But for all my years of experience, understanding of management and of the clinical aspects of the care, none qualified me to truly understand. Only those in that same special club (one in which they had never wanted to enrol) could truly understand. The reality of loss: not by bereavement, but to brain injury. People apologising; people ignoring; people embarrassed and not knowing what to say; people shaking their heads at the question of whether or not there will ever be any improvement. People “just wondering if it might have been better if…”
Three years later I did feel a dusting of the families’ despair, exhaustion, and isolation, when I was admitted to a stroke unit. But I bounced back to 100% fitness. What helped me was to remember that call, and how others deal with far more.
Our families amazed and inspired me. From the lady (blessed not with fame nor wealth, but love and compassion) who rescued from an orphanage overseas a blind and brain-injured youngster who was being abused by other children; to the couple already in their sixties who fostered and then adopted a profoundly brain-injured child, not only devoting themselves to him, but fundraising (in their ‘spare time’!) to help others. From the couple who cared for their three brain-injured children; to those whose own child had not survived a brain injury, but who were determined to help and support others whose children were still alive.
Who could have failed to have come into work each day and not be humbled? How could I have ever justified ‘having a bad day at the office’?
As for Roy’s family, they had gone home and diligently applied themselves day in and day out to trying to stimulate part of his brain, getting friends and family members involved. And today they had telephoned to tell us between sobs of joy and excitement: something amazing had just happened! Roy had smiled!
Smiled for the first time in two years – since he had been in a drowning accident, and had been resuscitated after forty minutes.
That smile was priceless to those parents. It had given back to them a little bit of their son.