When Chantal was 37 weeks pregnant, she and her husband Christopher were involved in a car crash.
Following their son’s traumatic birth, they were told that it was highly unlikely that he would ever walk, talk, feed himself, or even recognise his parents. Life was soon a nonstop round of hospital visits and operations – all against the backdrop of Christopher’s work as a church minister.
As his peers started to say their first words, Jonathan could only frown or grin – he was essentially ‘locked in’ and totally unable to communicate beyond a ‘yes’ or a ‘no’. He went to a nearby special school, but eventually a health worker asked Chantal whether she had tried to teach Jonathan his letters and numbers. With the help of various professionals and a huge amount of patience from Chantal, it was established that Jonathan’s eyes would be his key means of communication. They tried various types of ‘eye gaze’ equipment but eventually settled on a Perspex spelling board. Jonathan turned out to be a highly motivated student. He learnt to recognise different letters and numbers and, using a system of colour-coded letters, he began to be able to spell out whole words.
Clergy wives’ prayer
I first came into contact with the family through a Facebook group for clergy wives. Jonathan had been asked to take part in the CBBC’s My Life series (short episodes about individual children and their lives). The producers were trying to remove all references to Jonathan’s faith from the 15-minute film. Jonathan was furious and upset, and Chantal asked the group to pray that Jonathan’s words about his Christian faith would be reinstated. It was a long, hard fight – but they succeeded in getting 15 seconds of Jonathan’s testimony back into the episode. Since then, I have been following Jonathan’s blog (www.eyecantalk.com).
Jonathan had a book published in July – Eye Can Write: a memoir of a child’s silent soul emerg- ing – painstakingly written, letter by letter. He has also helped to launch a charity – Teach Us Too – which campaigns for all non-verbal children to be taught to read and write. In his own words: ‘It unlocks their voice, enabling them to say exactly what they want to. We stop being seen as mere recipients and start being valued as members of society.’
Faith in Christ
So, what goes on inside a mind and heart that is locked away for nine long years? If you read Jonathan’s book, you will begin to see – not least, the depth and richness of Jonathan’s faith in Jesus Christ. When he was nine, Jonathan was in an induced coma. He describes that near-death experience in these terms: ‘…as the time drew on I was aware that I had a choice to make. Either I could stay to meet the gardener, my saviour; or I could go back to my fragile sick body; back to my mind trapped in silence; back to the family I loved.
‘“Jonathan.” My mother’s voice called me from beyond the garden, and my decision was made. That was the hardest decision of my life, but it has also shaped my perspective ever since. While my soul longs to live in the garden, my heart is torn between my family and freedom, but with Jesus’ presence helping me here, I know I can endure my limiting body for longer. My experience in the garden has given me a zest for life.’
Jonathan lives in rural Wiltshire along with his two sisters, Jemima and Susannah. Christopher, Jonathan’s father, is pastor of a group of nine Anglican churches. He shows me into the bright, airy room. Jonathan is sitting on his mum’s knee so that she can hold his head steady; opposite him is his teacher Sarah. I hope that I am pitching my questions appropriately.
MD: Jonathan, if you had to choose three words to describe yourself, what would they be?
Sarah picks up the Perspex spelling board and immediately Jonathan begins spelling out his first choice of adjective, letter by letter, using his eyes. It strikes me that developing this level of communication has taken years of patient, loving hours.
The first word in answer to my question emerges quickly: ‘f-a-i-t-h-f-u-l’. Interesting choice of word. Jonathan always chooses his words very carefully. There’s a pause. ‘I can’t think,’ Jonathan spells out. We agree to come back to that one. Although it’s a hard question, Chantal and Sarah are pleased he’s being asked something new, so we’re not letting him off the hook. We all want to know the answer!
I move on to books, because I know that Jonathan loves books. His mum has read endlessly to him since he was little.
MD: If you could step inside a book and live in that world, which book would it be?
Chantal and Sarah know the answer from the very first letter. But Jonathan insists on spelling it out completely: ‘N-a-r-n-i-a’. Lewis is a favourite author – along with Tolkein, anything and everything by Michael Morpurgo, and a heap of poets.
MD: Can you tell me a bit about what your faith in Jesus means to you day by day?
No hesitation at all here and plenty that Jonathan wants to say. He tells me: ‘It means everything. Jesus in my constant companion and saviour and friend.’
I ask him if he has a favourite Bible verse or passage. Again, he is off! Letter by letter, he explains: ‘I like the story of the healing of the paralysed man.’ I ask if he can tell me why he likes this one particularly. ‘Because his friends took him and they believed and so did he. Jesus was gentle with him and healed him and he told the leaders off and we disabled people need advocates like Jesus.’
MD: From the CBBC film, I know that you love your church family. Can you tell me what you love particularly?
‘They treat me like I understand. And I love meeting people.’
I ask him if there’s anything he would like to say to church leaders about loving and caring for people like him. ‘It is wonderful when people talk to us like we understand. We have a lot to offer. Listen to us. We have more time to watch and pray, and we notice more.’ Good answer.
MD: You strike me as someone who thinks very deeply about a lot of issues, what is the big thing on your mind at the moment?
Despite having had no warning of this question, he answers straightaway. ‘How to prepare my sisters for when I go to Jesus’ garden.’ Chantal interjects and explains that this is on Jonathan’s mind a great deal. Jonathan continues: ‘How to be an effective voice for the voiceless while I am still here.’ There’s more: ‘What to write next to help others.’ It’s all about helping other people and a total confidence about the future.
There’s another thing: ‘I c-a-n-t w-a-i-t t-o g…’ Chantal thinks she knows what Jonathan is going to say. He often talks about the fact that he can’t wait to go to heaven and she assumes that’s where his sentence is heading today. But she’s wrong! Jonathan continues: ‘I can’t wait to g… get a dog!!!’ We all laugh – a lot! Apparently, he has been campaigning to get a dog since he was very little – now his sister Susannah has joined in the crusade for a furry pet.
Before I leave, I ask Jonathan to stamp my copy of his book with his personalised stamp. He also spells out a message for me on the frontispiece. I am ridiculously pleased.
We come back to the three words he might use to describe himself. I tell him that I have thought of three words and I want to see what he thinks of them – I have cheated a bit and added a fourth. My first three words are these: ‘loved’ (by God, by his family, his friends – and by everyone who meets him, it seems); ‘clever’ (he is easily the cleverest 12-year-old I have ever met); ‘inspirational’ (indisputable). Huge grins from Jonathan – I’m obviously not too far off track. To this, I add my fourth word: ‘cheeky’. His head tips back and the grins are broader than ever. And then his reply, via the spelling board: ‘Me, cheeky? Never.’
Since meeting Jonathan, the words of Psalm 139 have been running around in my mind: ‘fearfully and wonderfully made’. They seem a particularly fitting description of this extraordinary young man.
Mary Davis is an editor and is married to CJ, who is minister of St Nick’s Tooting.