Symbol and story: Tread softly…

Someone has laid out brightly coloured circles as stepping-stones across the hospital grass and Leo, my youngest son, is spending the summer evening leaping across from one to another.

When he reaches the end, he turns round and comes back. He does this over and over, scarcely pausing at the turn.  

We both know that it will be a long time before he is able to do this again.

Leo has cerebral palsy and in recent years his joints have become tighter, his right foot has lost all flexibility and he is walking (or rather running) higher and higher on his toes.  He is now eleven and the consultant thinks the time has come to operate. Tomorrow he will be having a multi-level operation at the Nuffield Orthopaedic Hospital in Oxford. They will break both his femurs and rotate outwards, put in rods, lengthen various muscles and move one of the quadricep muscles to the side on each leg.

There is no alternative: “Without surgery he will be off his feet in two years,” the consultant tells us. He also tells us that it will take a year (if things go well) for him to get back to the level of mobility that he has now.

The operation itself lasts five hours and goes well.  Other parents tell us that we do not need to worry about pain relief as the hospital is brilliant at it. 

At first things are fine. Leo’s dad, sister and brother come in to say goodbye before they go home.  Leo, who is on morphine, is cheerful but sleepy.

But once they have gone, things start to get difficult. Despite the morphine, Leo is clearly in a lot of pain.  The nurses discover that the morphine pump is leaking and decide that as it will be removed later that day, they will take it out now. As well, Leo develops nerve pain in his right foot, causing him to stop suddenly as a wave of excruciating pain overcomes him. He is given amitriptyline, which helps, but other things like massage and desensitising with hot and cold water will have to wait until his foot is out of plaster. 

Worst of all: HE NEVER SLEEPS.

As his Devoted and Caring Parent, I never sleep either. I lie beside him on the makeshift parent bed, ready to offer comfort, support and hope whenever he needs it.  At last, on the third night, all is quiet and I begin to hope that I might doze off.

Suddenly Leo sits up in bed, reaches into his mouth and holds out a tooth. “It was getting looser and looser,” he tells me triumphantly.

“He’s all yours,” I tell the nursing staff, somewhat bitterly, before making my way to the parents’ room.  “If I don’t get some sleep, I’ll probably murder him.”

By Saturday, apart from some brief physiotherapy sessions, Leo is spending the day lying listless and inert on his bed. He does not even have the energy or interest to listen to his Harry Potter tapes.  He is a long way from the energetic child of a few days ago, bouncing across the stepping stones.

But Saturday is the day when the family come to visit.  His father and siblings arrive, bearing gifts.  Nancy has brought him the soundtrack to Lord of the Rings. Timothy, our middle son, is currently into woodwork and has spent the week making Leo a wooden sword.  He gives it to him now.

And instantly Leo is transformed. 

He sits up and asks to be transferred to the wheelchair. Apathy and depression drop from him. He is chatting, laughing and waving his sword as he gets Nancy and Timothy to take him on a conducted tour of the ward. 

There are still difficult days ahead, but the sword is a turning point. Naturally strong willed he pushes himself at physio. The staff (who are all brilliant!) work with him and by the time we leave two weeks later he can walk the length of the corridor using the kaye walker.  

The rest of the summer is spent with my sons and their friends making a film (unintentionally hilarious and sadly unfinished) called the Ascent of the Craybie. There is a lot of set piece fighting and Leo, with his sword, has a key role from his wheelchair as the Grand Master. 

What did that sword symbolise to Leo?

I tried, while writing this, to offer some suggestions as to what the sword might have meant. But each idea, when translated into words, seemed somehow to diminish the power of the symbol.   

(I made the mistake recently of asking him: “Violence,” he responded cheerfully. “War. Death.  Being able to overpower weak non sword people.”  Okay Leo, forget I asked.)

So now I have left it, except perhaps to ask: Was it about who he was, who he is or who he might become? 

Reading over this story, I was struck by Leo leaping across the stepping stones the evening before his operation.  I wondered if this was his attempt to create a memory that would act as a symbol: that what he could do once, he would do again?  Do we use our memories as symbols of who we are and what we might become? 

It seems to me that we cannot consciously create the symbols that have power in our lives, for if we try to do so we become too objective and the symbol loses its emotional impact. 

I also wondered if the sword was a symbol for Timothy, who created it, as well as for Leo…

Although some symbols appear to be in common use (for example candles for light) we do not know what their impact is on individuals because symbols are beyond words.  (And of course, symbols can be negative as well as positive.)

If I had not been there to see the transformation, would I have realised the importance of the sword?  We are aware of symbols in film and books – possibly because some writers tend to overplay it: surely that’s not another cobweb shimmering in the moonlight?

But how aware are we of the symbols that others are using? Especially with children, we may be ignorant of the significance of the plain grey stone, the frayed end of yellow ribbon, the need to “run down to the lake, dip our hands in and wish” (Arthur Ransome in the author’s note for Swallows and Amazons).

Tread softly…

Leo took the sword to uni and it has travelled round London with him as he changes accommodation.

He has it still. It hangs on the wall behind him, part of the background for  endless zoom meetings…

Challenging preconceptions: The church trip

It is a sunny autumn day several years ago, and we are on our church trip to Walsingham.  This is the first time we have done this as a church and I have brought along my two sons (aged 10 and 13) and a couple of their friends.

We disembark from the coach in the car park and prepare to walk through the town to the shrine.  My younger son, who has cerebral palsy and cannot walk far because of the stiffness of his legs and the calluses on his feet, gets into his wheelchair.  His brother starts to push him down the hill.

We are used to this.  We are also used to people looking at us wherever we go.  I can almost see the thought bubbles above their heads: “Poor little boy.  I wonder what his problem is?”  “Why are they letting that other child push that heavy wheelchair?”  People look at us with a mixture of sympathy and pity, but I think they mean well…

Except that this time it is different.

Walsingham is the second stop on our church trip.  Earlier in the day we went to Castle Acre Priory.  My younger son got out of his wheelchair and ran around with the others, playing some kind of war game, chasing in and out the ruins.  On the way back to the coach we go past a shop selling wooden weapons.  As one boy, they stop, retrace their steps and go in.  As one boy, they come out, armed to the teeth with wooden swords and daggers. Or in the case of Adam, my sons’ friend, an axe.

So, when we get out the coach in Walsingham, we no longer fit the stereotype of disabled child and family.

Instead my son sits in his wheelchair with his sword across his knees.  In the less crowded parts of the town he picks it up and gives it a quick wave around.  He is accompanied by his brother and friends, weapons at the ready.

We are not inconspicuous.  People look, start to switch on their sympathy faces, and pause, baffled.

For how do you react to a child in a wheelchair who is waving a sword?

The vicar and I, several paces behind, are shaking with laughter. The boys, their minds on the possibilities that weaponry might add to their games, seem oblivious to the attention they are gathering.  They would be noticeable anywhere but seem especially so here in Walsingham where people have come on pilgrimage, to reflect, pray and make meaning.

We watch as people register in succession the wheelchair, the child, his sword, the other boys and their weapons.  Adam’s axe adds the final touch of incongruity to this procession through the town…

When we reach the shrine, our vicar gently suggests to the boys that they put their weapons away.

“Okay,” says Adam, obligingly stuffing his axe down the back of his anorak.

We go in…