the human story / Virág Wheeler-Mezei

Virág is a stranger to me; one whose story I have fleetingly glimpsed via a mutual friend on Facebook. Every so often her posts reached my newsfeed and, like many people on the edge of our social circles, I picked up an incomplete picture of her life. There was the romance, the engagement, the happy baby, the smiling, strong and weary mother, the proud father, but then a subtle change. I noticed that baby Luke had a tube passing into his nose; his charming smile slightly lopsided. After a few years, with great fanfare from her husband, Virág had released a book. The cover showed a photo of Luke held aloft by his mother, the words My Mighty Son emblazoned in a quirky blue font across the top.

Virág’s husband, James, was a good friend of mine at school but we’d been out of touch for over a decade, so it was a surprise when I received a message from him out of the blue:

“You may have seen on Facebook that our son is very ill with brain cancer and in fact his condition has just significantly deteriorated… We’re packing in as many fun-filled days as he can manage and I’m trying to find someone who could spend some time with us, snapping away and taking videos…”

So it was that I found myself travelling across country to Bath, to meet Luke and speak to Virág about her book.

The countryside around Bath slopes violently up and down for miles, with the roads taking in hairpin bends, vertiginous drops and quirky names like ‘Brassknocker Hill’. Approaching the Wheeler-Mezei household, I passed a tumbledown cottage in the local stone and arrived outside a stereotypical British semi-detached house, which looks just like any other on the street. It’s a far cry from Virág’s native Hungary, but over the past decade she has grown accustomed to the differences:

“I feel at home in both countries, but the people are more open in Hungary; you can go to see your neighbour any time of the day. Here, you need to make an appointment; ‘can I come for a cup of tea at three o’clock on Wednesday’, you know?”

In My Mighty Son, Virág explores her childhood and adolescence, with a strong focus on faith. Her grandmother introduced her to Christianity, arousing a curiosity which led to early experiences of prayer and church. However, Catholicism in Hungary held little appeal for a young Virág; “I thought there was just one way to worship and I didn’t really like everything they were teaching and saying.”

Throughout the book, the theme of an awakening sense of spirituality is returned to again and again, but it is presented in a way that allows the reader to sit back and make up their own mind about events in her life. Indeed at the very start Virág writes; ‘Faith? Your reaction might be, “I am not interested in a Christian book.” You might not even believe in God. But I’m hoping that even if you [don’t], you can find some useful words, thoughts and ideas…’

My Mighty Son is published by Onwards and Upwards and available from mymightyson.co.uk

Reading the book as a committed atheist, I never felt overwhelmed by a religious message. Indeed, it was interesting to hear about the journey Virág takes in re-discovering Christianity as an adult. In My Mighty Son, she occasionally writes about talking with God and I was keen to hear more about these religious experiences in person. We spoke about one particular event in the book which was very powerful, coming at a point in Virág’s marriage when she regularly wanted to walk out:

“It was so awful, we were always arguing, as we were at home together all day, seeing each other 24/7 and everything was about Luke.”

The family were at church for a service, but their son became unsettled and James took him home. Virág left early too, but couldn’t bear the thought of going back with James:

“I had a little walk up the hill. You can see the whole of Bath from there, I love that. I started to pray as I walked. I looked up at the sky and said ‘Oh God, what should I do?’ and as I said it, I looked down and I could see James pushing Luke across the playground in the pushchair. I couldn’t believe how far away they were. It couldn’t have been anyone else because we have lots of bags to carry all the time, so of course I went ‘Oh wow, it’s him’. I had this warm, shaky feeling and I thought, ‘look down; that’s your family, you have to go back’, you know? It was hard, but then I realised that we had to do this together, we just needed to work it out.”

As Virág is talking, a new addition to the family begins to stir next to us. Sophie is just two months old, and her parents were never sure if Luke would be around to meet his little sister. Seeing the two of them together is heartwarming. Luke is so gentle and kind, with none of the jealousy or petulance you would expect from a first child. As I take photos of the family, he reaches out to Sophie and cradles her soft face in his hands. Her eyes meet his and he smiles that wonderful quirky smile.

It was towards the end of winter last year when Virág began to think about having another baby, but at first she had doubts about the idea:

“We knew that Luke would have a short life and, I love children, but if he’s gone, would I want to go through that again? It’s not likely that another child would have a tumour, but as a parent you always worry that something will happen.”

At that point, Luke was having an MRI scan every three months to check for the presence of new brain tumours. It was (and still is) tough for both of them and James said that he needed to spend some time praying and thinking further about the decision. As Mothering Sunday approached, Luke made a card for Virág which changed the whole situation:

“He gave me this picture which just looks exactly like an ultrasound scan — you can see it there on the wall.”

The ‘ultrasound’ card from Luke

I look up to the picture she is talking about and it is quite remarkable how a simple piece of black card with a few strokes of white paint can so resemble that image we are all familiar with. There is a head, a body curving round to feet, and the card is mounted in pride of place on the living room wall. But it wasn’t just this which convinced James to try for a second child, as Virág explains:

“I asked Luke; ‘who is it in the picture?’ and he said ‘kislány’, which means ‘little girl’ in Hungarian. So I told James, ‘well that’s the answer to your prayers, because Luke wants us to be happy and continue our life and, yes, to have a baby’. That was a really big ‘wow’ and gave me the same warm feeling that I felt before; it was quite shocking, you know?”

While Virág explains the story of Sophie to me, Luke sleeps in his room upstairs. It was during these daily two-hour naps that she had the opportunity to write My Mighty Son. Typing over a thousand words each day, she finished a fifty thousand word manuscript by February last year.

“I wrote it in English; I found it easier really because I’ve been living here for nine years, speaking English most of the time. In fact, I found out that I’m not talking Hungarian as nicely as I was before. Anything I couldn’t express in the book, well, James helped me with that because he knows half of the story. He’s been really helpful you know, all the way through.”

I wonder out loud if perhaps Virág regrets some of her openness in writing about her marriage, but her response is amusingly frank:

“I would have liked to have more of it in the book, but when I found a publisher they took a lot of things out. I just gave too many details; it took quite a long time to work with them, making changes and so on. But I do feel like it’s my book and I’m really happy about that. It’s all me and I’m so grateful that not much has changed. It’s just, you know, easier to read.”

My Mighty Son is indeed a very compelling book; it is not only a moving story about Luke’s life, but also a profound insight into a strong marriage, which has endured and prospered through terrible adversity. In person, I witness as Virág and James flow together, effortlessly addressing Luke’s complex medical needs, while tending to two-month old Sophie, cooking delicious meals and preparing for daily trips to keep their children entertained. The impact of Luke’s condition is undeniable; they are in and out of hospital on a regular basis, unable to travel to Virág’s native Hungary and both are full time carers. However, Luke has been such a gift in so many ways, deeply affecting their outlook on life:

“I was really, really afraid of death; I just hated that word, you know, really, really hated it. I couldn’t get out of my mind that my son was dying, and all these things, like how much I was going to miss him. Then I had a moment with Luke when I prayed with him and asked God to make him strong. Luke didn’t know the sign for that, but suddenly he signed; ‘me… strong’ and pointed to himself and I said ‘oh wow, yes!’. That warm, shaky feeling came, and I felt overwhelmed; it was really amazing and I just cried. That moment, straight away, I wasn’t worried about death or anything like that. It really took it from my mind.”

Before I set off home, James offers me some apple pie. It is such a wholesome gesture that I laugh at the incongruity of the situation. I sit with Luke at the table; while he isn’t able to take food orally due to complications with swallowing, his parents do their best to make him feel part of mealtimes. He is offered a spoon and a bowl and allowed to taste certain sauces and paste-like foods. He turns to me and holds out a spoon covered with apple sauce. Luke’s tracheostomy has made speaking difficult, but he supplements this with Makaton sign language. I’m unable to make out what he is saying at first, and James translates for me; “he says it needs new batteries”. I look confused and he clarifies; “the spoon; it’s out of batteries.”

Luke looks at me defiantly; “needs new batteries” he says. I take the plastic spoon and look at it closely, turning it this way and that, then I carefully mime replacing the batteries and pass it back to him. “There you go, Luke.”

His face lights up and that wonderful smile is back.

“Thank you” he says.

My Mighty Son

can be purchased as a book or ebook from mymightyson.co.uk where readers can also find out more about Luke’s life since the book

the human story

is a short collection of interviews with individuals from across society, who have led interesting and varied lives, representing a broad spectrum of human experience. They were written by Chris D’Agorne— the stories seek to find a common thread of humanity across this diverse collection of people. If you would like to nominate an interviewee, leave a comment below.

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Writer and parent, living by the sea in Weston-super-Mare, UK. With 5 years in TV post production, 2 years in post-grad science and 5 years in marketing.

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