An incredible family – and an incredible story. Thank you James and Virag.
“I received an email recently, with the subject “the words no parent ever wants to hear”. When I opened the email, to find the sender was a healthcare company making a trivial point about the suprise of running out of nappies, I was rather exasperated.
Over the past three and a half years, I have heard too many things that no parent ever wants to hear. Starting with “Your baby has a build up of fluid in his brain”, to “There’s a 10% chance of death during the operation”, to “The chemo didn’t work, i’m so sorry, to he only has months to live”.
It’s been a real roller-coaster over the past few years. Along with the many, many lows, we’ve shared a lot of happy highs. When we were told a few months after his diagnosis that Luke only had a few months to live, when he was aged one and a bit, everything became even more serious than it had been before when we thought the doctors were on top of his brain cancer.
We knew we had to make the most of every moment, and we worked hard to ensure our days were fun, fully packed and varied. Against our default parenting position, any toy that he wanted, he got – how could we say no?!
We were both off work for an extended period – my wife Virag having been on maternity leave when Luke was diagnosed, and me having given up work when his tumours came back and we received the disastrous prognosis.
This meant that everyday was somewhat like a Saturday – we could go out to a petting farm or zoo, an outdoorsy place, meet friends, go shopping – whatever. As Luke grew older and could articulate more of what he actually wanted to do, he would often ask (in his special way) for his favourite – a simple bike ride.
Of course, the great deal of time that Virag and I spent together wasn’t always healthy for our relationship, but during the early days, the first two years or so, we couldn’t leave him with anyone, and what’s more we both felt we should be with him all of the time – partly for his safety and partly because time was short, (but we never knew how short), and it felt like the right thing to constantly be with him. And after all, how could we go out and enjoy ourselves, with our terminally ill son at home?
Luke’s brain tumour left him fairly disabled – a stroke caused by one of the earlier operations left him with a permanent left-sided weakness. This meant that not only could he not walk in any of his four years, but he needed a tracheostomy for safe breathing and couldn’t talk clearly at all. All of this made him extremely dependent on our care, much more so than parents of children the same age.
All throughout this strangest of times, God worked in his life in an amazing way. One of the most incredible ways was when Virag and I were trying to agree on whether the time was right to try for a baby. I was looking after Luke one afternoon and at one stage, got out some craft materials to make a card for the upcoming Mothering Sunday. The picture that Luke drew – in white paint on black paper – appeared to show an ultrasound image of a baby.
We have both been asked how this incredibly difficult time affected our faith – did we walk away from God? Whilst we had infinite questions for God, and struggled at first with the issue of healing, both of our personal faiths strengthened immensely: in particular Virag’s, who had always been afraid of death, but found peace from God on this concern. Virag felt God tell her to “write it down”, and so she did – you can read the full story by ordering a copy of My Mighty Son (£2.99 ebook, £7.99 paperback) from mymightyson.co.uk.”