Adapted by Amanda Bridget Griffin, ACN Canada
Over the course of the past 10 years no fewer than 7 million children have died in Russia from a range of different illnesses – an unimaginably vast number of individual tragedies. Sadly, the hospitals are in many cases still insufficiently prepared in caring for terminally ill children and their families. Once a child is diagnosed as terminally ill, he is discharged from hospital and sent home. Hence, the parents are left alone to deal not only with all their pain and fear, but also with innumerable practical and organizational problems. Many families live in what are known as ‘communal apartments’ which are dwellings shared by several families. Caring day and night for a child in such circumstances is sometimes impossible, and families often fall apart under the strain. Over and above all of this, friends and relations often tend to draw back, partly from the fear of infection, but also from a sense of helplessness and inadequacy.
The situation also impacts heavily on the healthy brothers and sisters who still need parental care themselves; often they cannot cope and suffer greatly as a result of the situation because their parents are entirely consumed with the care needed for their sick brother or sister. Moreover, these children also have to look on and see the sufferings of their sibling, a suffering that can often drag on for years.
Improving the children’s quality of life …
In the year 2003, an Orthodox priest in Saint Petersburg, Father Aleksandr Tkachenko, had an idea. Having previously studied in the United States to become a hospital chaplain, he realized that there was a need in Russia for something similar and that it must also be put in place as soon as possible. And so this dynamic young priest decided to establish the first children’s hospice, together with qualified doctors and psychologists.
Today the hospice cares for over 300 terminally ill children, providing not only medical care but also supporting them and their families lovingly around the clock. This work ranges from various different forms of therapy intended to improve the quality of life of the children, (most of who are suffering from cancer) through to a dedicated effort of doing everything humanly possible to make these children happy and allow them to enjoy as much of a normal childhood as they can.
Sadly, by the time many of these children arrive at the hospice, they have already become so accustomed to their loneliness, suffering and isolation that it can be difficult to motivate them to engage in light-hearted activities. Trained social workers and specialists are on hand to provide sensitively targeted care, while doctors, psychologists, social workers, priests and volunteer helpers all work hand-in-hand to ease the difficult plight of the children and their families.
The hospice also has horses and other animals and the staff are constantly striving, with imaginative love, to stimulate and surprise the children – as they did this year, for example, by taking them behind the scenes of the production of a cartoon film. A range of different excursions are organized, to which the families of the children are also invited to take part so they too can enjoy happier moments in the midst of the suffering and tension, for as Father Aleksandr Tkachenko observes, “Caring for their sick children can often bring the parents to the edge of exhaustion. They too need the occasional pause for breath, so that they do not have a breakdown.” Staff and volunteer helpers work tirelessly, 24 hours a day, to help these young patients and their parents, not only do they care for the children living in the hospice but also support families who are caring for their children at home, providing the same kind of medical, material, pastoral, psychological and social help.
Father Aleksandr writes: “Many children endure very long illnesses, and eventually end up lying in a coma on their deathbed. Then there is nothing left for us to do but to pray together with their parents at their bedside. It is a great comfort for the parents when we tell them that their children are now angels in heaven and are praying for them.” From his own experience he knows that these dying children are often inwardly very mature and grown up. “It is not I who talk to them, but they who tell me about their experience with God,” he tells us. “And above all they ask me again and again to comfort their parents – they think more about their loved ones than about themselves.”
ACN has been involved right from the start in supporting the work of this children’s hospice, most recently with a contribution of $ 33,400 for a vehicle that was urgently needed. It is used particularly to provide an enormous range of support to families caring for their children at home within a 15 mile (25 km) radius, but also for the outings that provide these little patients with so much joy, and of course for all the other necessary trips to doctors, physiotherapists and psychologists, etc.
On behalf of all these sick children and their families, Father Aleksandr wants to express his heartfelt thanks to all the benefactors of ACN.
This project is an example of our work. If you would like to support a similar project, please contact one of the persons below to make your donation.
Robert Lalonde (514) 932-0552 poste 224
Amanda Bridget Griffin (514) 932-0552 poste 221
Tomorrow we will continue with an article on Catholic Russia entitled Support for the publication of the Siberian Catholic Newspaper in the diocese of the Transfiguration of the Lord in Novosibirsk