Parental Guidance Advised
We were late. Pippa and I pedalled hard, powering the tandem up one of Belgrade’s hills, as I navigated the handlebars between two lines of stopped cars, idling in the red glow of the traffic lights. There were mere millimetres to spare. At times, less. We turned left halfway up a busy road, lined with unattractive concrete buildings. This took us onto another street lined with more uninviting buildings. We found number five and I pressed the buzzer labelled Uvek Sa Decom – Always with the Children.
Mileva stopped typing and caught the eye of Dushanka, her colleague and close friend. Mileva’s face was round and the curve of her chin matched the bow of her lips as she smiled. The young man and his friend had finally arrived. Mileva passed a wall festooned with photos of children and football stars smiling. Some of the children had no hair; some of the smiles seemed forced. She walked past the Eiffel tower and Statue of Liberty and down the stairs to greet the sweaty and excitable Brits who had in tow a hot pink and powder blue tandem. They made a strange sight.
Mileva was no ordinary mum – if any mum can be ordinary. In 1995, as the former Yugoslavia fought with its neighbours, she had to face her own battle when her daughter was diagnosed with cancer. Despite her usual buoyancy, at the beginning she had no idea what to do, leaving her deflated. In an age before the internet and facing a language barrier there was a scarcity of information however Mileva was determined to make knowledge her weapon. She got hold of books, articles and her family rallied round to support her to find out everything she could about the challenge she and her daughter faced. This took her to Uvek Sa Decom, an organisation founded a few years before in 1991. Think of it as the CLIC Sargent of Serbia.
Dushenka’s path to Uvek Sa Decom happened almost two decades later. She also had to deal with the surprise, pain and bewilderment of hearing the news her child had cancer. Had she failed as a parent? How could she ever let her child out of her sight again? How had life done this to her? At that time her banana smile – corners of her mouth straining to reach her eyebrows – rarely shone as feelings of self-pity consumed her. These were arrested by the words of the doctor treating her child. He took her to one side, “Dushenka, pull yourself together! It’s your child who has cancer, not you. Now be strong!” he said, bluntly and brusquely. Those forceful words – though loaded with potential to backfire – spurred Dushenka rethink how she had been acting. She resolved that her focus from now would be on doing what was best for her child, not herself. Uvek Sa Decom – and Mileva – helped support her and her child.
Both Mileva’s and Dushenka’s children got through treatment successfully and have moved on with their lives. However, for Mileva and Dushenka those years left a lasting impact, brought them together, and changed the direction of their lives. For eight years they have worked together to support other children and parents affected by cancer: there is an apartment for families from outside the capital; they provide toys and games consoles for the children in hospital; they have also cultivated close relationships with local sports teams, like Red Star FC, and film stars, who visit Serbia’s children undergoing treatment, giving them something to look forward to in a time that often feels bleak. These visits have ceased this year, but the ladies still get the teams to send videos to the children every fortnight.
But what makes Mileva and Dushenka special?
Perhaps what sets them apart is their ability to relate to the parents who are caught in the unexpected maelstrom. Their experiences make them qualified in a way that (thankfully) few parents are: it gives them understanding and credibility and yet also allows them to challenge the attitudes some parents take. This makes them unusual. Most friends and onlookers would hesitate – wisely – to give advice to a parent who has been thrust into an emotional meatgrinder. That doesn’t mean that advice is never needed.
One of the most common attitudes that parents take is to wrap their children in cotton wool, a response driven by “love without frontiers” Dushenka says. When a parent hears the word “cancer”, they immediately jump to “dead” and they try to do everything they can to protect their child, perhaps also driven by understandable, though mistaken, feelings of guilt. Children are coddled and encouraged to rest. Limits a child’s experiences, at a time they are so precious, and can lead to big tensions especially for teenagers who are pulled back just as they want to be independent, experiment and loosen parental ties. Dushenka is not afraid to dish out tough love and often reminds parents to focus on their child’s happiness, not their own – just as she had to. Giving a child freedom to spread their wings is incredibly tough, but vital.
I think back to my parents who let me get on with my life during treatment, helping me through the drudgery of periods of sickness from chemo, but selflessly letting me go as I travelled to Edinburgh, France and Egypt without them - as much as they would have liked to have shared these times when I was fairly functional. Although at the time I didn’t appreciate things could have been another way, looking back now I see that the freedom I had to thrive between chemo cycles allowed me to tackle difficult periods in my treatment with more positivity and determination. If home had felt oppressive too escape from my condition would have been impossible. Meeting Mileva and Dushenka has forced me to re-evaluate how it must have been for Mum and Dad – a son they only saw sick, who as soon as he was able buggered off out of Bristol, leaving them with mainly the dross and only joy by proxy. Their love ran deep.
Another problem of cotton wool parenting is how it limits activity, with many children discouraged from exercising and excursions happening in a tightly controlled fashion. By contrast, Mileva’s daughter exercised through treatment despite a tumour in her left hip which meant she couldn’t cycle – her passion – nor run or walk. She still wanted to exercise, so they went to the doctor; could she swim? He shrugged, he couldn’t see why not. With Mileva’s husband getting in on the action and the pool with his daughter, swimming became a family activity. In doing so they readjusted what “care” looked like.
When asked about the barriers stopping children with cancer from exercising Mileva thinks it is “the same if they had cancer or not” – you need to find a way you enjoy being active. This reminds me of a friend who says “exercise is just a fancy word for movement”; each of us will be happier when we find a way of moving we can do consistently and enjoy. As Mileva prepared black tea for us I had a moment to reflect that I had been lucky that I was not only able to keep exercising through treatment, but also in a way I loved. Whilst for a period my shoulder was very uncomfortable when running and it was scarcely enjoyable, I was still able to enjoy riding the roads around Bristol, getting my daily dose of endorphins.
As we talk, it is clear a mutual affection runs deep between the women and I wonder how much it has sustained them through the years. Running a small organisation is never straightforward, so it is easy to understand why their proudest achievement is Uvek Sa Decom’s continued work for almost 30 years, in the process helping somewhere between 3,000 and 4,000 children in Serbia, Macedonia and Bosnia. However, their commitment is rooted much deeper than professional pride – their experiences means this work will always be personal and they are able to understand and help parents and children in a way few can.
As we leave, I ask to take a photo of them, and unbidden, an awkward side-by-side photo turns into a hug, Mileva’s head resting on Dushenka’s shoulder. This slotting together of two pieces speaks volumes of affection, trust and shared experiences which hold them together and give them the strength to take another step forward, even in this most challenging of years.
