Our work Real life stories Kseniya Kostyuk: A mother’s love knows no limits Mothers accomplish miracles It is really important to tell you about the greatest heroes we know — the mothers of the children in our care. Every day, they do something incredible, fighting for their children’s lives with no concern for themselves. Often, mother and child find themselves alone, without material support, with no housing of their own in an unknown city. At the end of a hard day, it feels like they have no strength left like the well has run dry. But a mother’s love knows no limits. They get their second wind, smile through the tears, hug their children and keep doing what only they can do. We know that mothers accomplish miracles, just like today’s heroine — Kseniya Kostyuk, mother of Vanya Safonov. When, in March 2015, four-year-old Vanya was diagnosed with a brain stem glioma, Kseniya and her family sent requests to American, Israeli and European hospitals which treat this type of tumour. The specialists informed them that the outlook was poor and that children with this diagnosis have a life expectancy of six to eighteen months. Two years later, Vanya is still alive. “Nobody can believe when they first meet Vanya that he has an inoperable brain stem glioma. He’s just that lively and open-hearted,” says Kseniya. “Vanya instantly charms everyone with his amazing character, and with his joyfulness. I think that’s the reason why when he’s ill we’re surrounded by so many people willing to help: volunteers and other children’s mothers.” The longer you talk to Kseniya, the more you realise that her own openness, kindness, fearlessness and love are also part of what draws people to her and Vanya. “Vanya’s illness helped me open up to people. Before, I’d been bringing him up on my own. His father and I divorced when Vanya was one year old. My whole life has been built around my son and our survival. After all, the two of us were alone, and I had to earn money for both rent and living expenses on my own. I lived in a cocoon of my own concerns and problems, only spending time with three close friends. But now I have so many—mothers of other sick children who need support, and who phone me for advice. These days, when I bring Vanya to the monastery to pray together, I put more than two hundred people’s names in my written prayers for health. These are the people who helped us and supported us, brought together with us by fate.” Your lives are great! Live on, love each other! It wasn’t always like this. In the first year of Vanya’s illness, Kseniya spent day after day descending into a deep abyss of sorrow. “It was like there was a great gaping hole inside me,” Kseniya recalls. “I cried all the time where my son couldn’t see me. I struggled to say his diagnosis out loud. In my misery, I walled myself off from the world, and couldn’t believe that for other people, life was carrying on as usual. It was so strange to go down into the Metro and see worried people with unhappy faces. I looked at them and wanted to shout, ‘Your lives are great! Live on, love each other!’” At the end of that unending year of searching for answers, Kseniya suddenly understood: “There’s no life-saving treatment for Vanya out there that I simply don’t know about, and that I could find during my sleepless nights spent online. I realised that if there’s a sudden breakthrough and that treatment appears, I’ll find out about it anyway. So I stopped looking. “What made me hit rock bottom was the death of a boy called Sasha, who had the same illness as my Vanya. We fought for Sasha till the very end. I phoned charities and begged them to help him. He faded away before my very eyes, but I didn’t understand; I thought we could find a way to save him in another country, at another hospital. That day, Vanya and I were about to go to the monastery in Oryol Oblast, and I phoned Sasha’s mother to say, ‘We’ll be praying for Sasha.’ And she replied, ‘My Sasha’s passed away.’ And that was that. When we reached the monastery, I spent a long time talking to the monks about it. That’s when I realised that Vanya and I have nothing except today, and that all we can do is to live it.” When no plans is the best plan For two years now, Kseniya hasn’t made plans, not even a week in advance, though before Vanya’s illness she had their lives planned out in detail for decades to come. “Now I remember the way I was before my son fell ill, and I can’t believe I’m the same person. Vanya and I didn’t even go travelling anywhere. I thought that he was still little and this wasn’t the best time. I thought that someday we’d go to the seaside together, that we still had everything ahead of us,” Kseniya remembers with a smile. During her two years of struggling with Vanya’s illness, she’s spent only a few months at home; after he was discharged from hospital they went to the Mount Athon Monastery in Greece, Legoland in Denmark and, once a month, made a pilgrimage across Russia. They also spent several 21-day rehabilitation periods at the Russkoye Pole Centre. “I got a phone call from Vanya’s school recently, and they were asking whether he’d be attending in September, so I told it the way it was: things can change at any moment and I just don’t know,” Kseniya says lightly. It seems like the decision not to think about the future is a huge weight off her shoulders. It gives her the right to enjoy every moment with her son. While we’re talking, Vanya is watching a cartoon. He’s glad the conversation’s going on for so long, because normally he’s not allowed to spend so much time in front of the TV. “Though right now I’m trying to give Vanya as much freedom as possible. I let him choose what to do for himself. And he’s changing before my very eyes, becoming more independent. After those months of radiation and anti-tumour therapy, Vanya was very withdrawn, and he stuck to me like glue. Now he can go draw on his own, or build LEGOs. He’s started letting me go to the kitchen on my own. “Of course, Vanya and I are always together, since he doesn’t go out—not to kindergarten and not to children’s clubs. We’re living on Vanya’s disability benefit in Moscow, and we don’t have the money to pay for clubs, swimming pools or preparing for school. My friends help me, as do other mothers, and my brothers send me some money from Krasnodar. It’s only just enough to cover daily expenses.” Dream of a proper childhood Kseniya’s biggest dream is to give Vanya a proper “childhood”, to have him go study in clubs and make friends. “In hospital, Vanya would often wake up in tears. He’d been dreaming of kindergarten. He asked me if we could go there again. I didn’t know what to tell him, so I’d distract him from those thoughts. Now, in principle Vanya can go to kindergarten, but I can’t sign him up to a normal one with large group sizes. Vanya’s tumour is inoperable, so it’s still there, and even a trivial injury could put his life in danger.” Kseniya could talk about Vanya forever. She spends the entire two-hour interview talking about her son with joy and delight. “Vanya is my soul, my life. What more can I say?” she confesses at the end. But when you ask her about her own health, she falls silent, not knowing what to say. “What can I tell you? I spend 24 hours a day and 7 days a week with Vanya, and I don’t get a single minute to stop and sit down. I’m always doing something with him… Before, I had the night to wash, do some laundry and cook for the next day. “I don’t think about myself. I know I should take care of myself and look after my health, but I never get round to it. I haven’t even been for a general check-up in several years. Now that Russkoye Pole’s been cutting back, mothers can’t have tests there, and I don’t have any opportunities to go to a clinic…” Kseniya looks thoughtful, and for the first time her voice sounds uncertain. “I’ve always had good stamina. I’ve played sports, and generally looked after myself. But I gave birth late, at 38, and of course that’s had an impact on my health. Plus I ended up on my own with a child. That’s when I stopped looking after myself—I simply didn’t have any personal time. And now, as I’m sure you understand, I don’t think about myself. Even though I know it’s wrong. But I’m the only one who can help my son. Sometimes you collapse at the end of the day drained to the last drop, and it seems like you can’t even raise a hand, never mind standing up. But then you remind yourself that you’re all Vanya has, that you’re his strength, his life. And you get your fourth wind of the day, and get up and go do what you have to.” I only found out from other mothers that my son’s entitled to disability benefit. Neither the doctors nor the social workers I spoke to ever told me. Kseniya’s voice turns serious, but there still isn’t any weariness in it. She talks about her hard life with happiness, and talking to her makes you feel happy and gives you new energy. That’s why the mothers of sick children call Kseniya every day—she offers them support, and she tells them the exact words of consolation that they need to hear right now, not rote platitudes. Kseniya is certain that it is these other mothers’ support that helps her endure: “Everything important that I’ve learned about my son’s illness and his condition I’ve learned from other mothers. The doctors don’t tell us these things. They don’t feel the need to, and it only makes them uncomfortable. But I am utterly convinced that every mother has the right to receive every last bit of information and make her own informed decision. We bear the responsibility for our children. We’re the only ones to whom they matter. Unfortunately, these days we have to fight for our right to information, for our right to social support. Heck, I only found out from other mothers that my son’s entitled to disability benefit. Neither the doctors nor the social workers I spoke to ever told me. ” Kseniya dreams of creating a resource website where mothers can share information and advice, and give each other support. “I want everything I’ve learned over these years to help other families. By and large, we’re the only ones to whom our children matter. And I fear to imagine what would have become of us if it hadn’t been for volunteers and charity donors. Right now, I don’t know programming, but I’m trying to find people who can help me with it.” And when you listen to Kseniya, you have faith that it will all work out. It’s not by accident that she’s become an example for so many—other mothers tell each other Kseniya and Vanya’s story because it is a story that inspires you to believe, to hope and to fight.