The caring women of the first Children’s Hospice
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“If now at night near the forest, at the spring or by the street, above the bushes you see blinking fireflies, you should know that they are still looking for their beautiful queen and can’t find her” – “Salamura’s Adventure”
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Manana:
“It’s been 5 months since the opening of the Children’s First Hospice. ‘Hospice’ is a Latin word. Originally it meant a house of rest for passengers coming from afar. In modern medicine a hospice is a place where terminal patients are kept temporarily. Our hospice is for children. Here we create conditions that ease their pain and instead of feeling marginalized from the public, they feel happy, they feel like members of the community until the very last minutes of their lives.

“The Country of Fireflies” – that’s how we named our hospice and it is entirely inspired by the fairy tale of Salamura – the shepherd of ladybugs – and Baia – the beautiful shepherd of fireflies. Fireflies shine at night and disappear during the day. The life of our kids resembles that of fireflies’. They are so strong that they can light a fire at night, in the dark. From the outside it seems as though their world is depressing, unbearable, and hard to watch. But each one of these children are so strong that they teach us this strength as well.”

Tamar:
“The children’s hospice is unique because we are not only helping children with pain management and with leaving this world properly, but we are also helping their parents. The main caregivers of these children at home are mothers who are chained to their children for 24 hours and have no time left for their own recreation. There’s a false belief that once a woman becomes a mother, she can endure anything and her resources are inexhaustible. Every person needs a break, some personal space to gain strength. We give parents the opportunity to leave their children with us for a few days, in a place where they will be cared for. And the parents can use this time for themselves.’

Manana:
“I’m always ready for the moment when they ask me, ‘What’s going to happen now?’ I can’t lie to them and say that there’s nothing wrong with them and that they will soon get better. So I have my answer ready – ‘Don’t be afraid! Everything will be alright.’ And you know what? I really believe that everything will be alright because our life doesn’t end in this world. It continues to shine like a firefly.”

Tamar:
“Unfortunately, our job sometimes requires us to lie. We call such lies ‘safe lies’. A question needs an answer. If the question concerns an irrational moment that no one knows anything about, such as death, the answer should be convincing. We believe in what we want to believe. ‘Will I get well?’ a 17-year-old Irakli asked me once. ‘Yes’ I answered. I apologized to Irakli a bit later when he was no longer with us. It’s never too late to say sorry.”

Manana:
“It is difficult for us to say goodbye to these children. We spend most of our time with them and we not only provide professional palliative care but we also share our emotions with them. The reason why we can keep working after each loss is because the sadness that stays with us turns into love, becomes part of our body, and fills us with new energy.”

Tamar:
“One of the problems in the medical field in our country is the improper delivery of a diagnosis to the patient. According to the Human Rights Convention, each person at every age has the right to know their own diagnosis and their future perspectives. In Georgia everything is determined by the culture, not the convention. According to our culture, someone is always taking responsibility for your life. Unfortunately, the majority of the medical staff has no experience of informing the patient about his/her diagnosis. Telling the truth requires the right environment, the right timing, and of course the right words. Every word needs to be well thought through before saying it out loud. Human emotions are often followed by tragic experiences, this is an inevitable part of our lives, but one can still minimize the harm by explaining everything to the parent first and then talking to the child in an appropriate language.

I remember the story of 10-year-old Zuka’s expected death. I remember how well his parents explained to Zuka’s siblings that Zuka would leave them and would continue to live without them. We also celebrated Ako’s birthday 5 days before he passed and thus we turned his last days into a celebration.

Manana:
At the Hospice all the caregivers are women. Only the driver and the director are male. Being a nurse is considered to be a female profession because culturally it is thought that only a woman can be a caregiver. However, I have to say that the fathers of our children are also actively involved in their children’s care.
Neither I nor Tamar have children of our own. People often say to me, at least have a child and you’ll have a caregiver when you’re old.’ This kind of attitude is totally unacceptable to me. If you have children, you have to raise them to be independent individuals rather than raise them selfishly, for your own good.

Tamar:
Yes, the desire to have a child and the love towards your child should be unselfish. You should also be able to give them a right to decide for themselves. A woman’s primary purpose is not having a child. A woman has the desire and the right to do many other important things. I think the field that I’m in is a good example of doing selfless work. The most important thing is not to lose love for the work that you dedicate yourself to.

Author: Maiko Chitia
Photo: Salome Tsopurashvili
Translation: Keke Kaikhosroshvili

(Author’s note: The Children’s Hospice was built in October 2015 with the help of Open Society Georgia. The hospice has multiple donors, private companies and individuals alike. The Country of Fireflies is still waiting for new donations).