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“It’s best for the children who die, because they no longer have to suffer”

This is a guest post by Amanda T., who lived and worked at Kalinovka orphanage:

“Within hours of arriving at Kalinovka for the first time, I was shocked by a conversation that began with this comment: “These children live such miserable lives that nobody is helping them by keeping them alive here. It is best for the children who die, because they no longer have to suffer like this.”

My instant, knee-jerk response was one that many of you are probably having right now: “No, that’s not true! All lives are valuable, and if we just fight long enough for these children, maybe their lives will improve and will be worth living.”

I spent six months living and working at Kalinovka, and there was never a single day when I didn’t think about that controversial comment. You see, the kids really do suffer there. They receive food, clothing, and a place to live, but that’s it. There is a distinct lack of nutrition, medicine, material comforts, attention, education, exercise, therapy, care, and – most importantly – love, that most of us take for granted in our daily lives. They are largely forgotten and have very few chances of ever leaving the institution through adoption, foster care, or other means.

Living in my comfortable home in America, far removed from Kalinovka by thousands of miles and months of absence, I don’t find myself thinking about that difficult conversation as often. Today, however, it came back with startling force. Rarely do I spend much time on Facebook, but this morning I found myself on the site and happened to scroll past a post that announced the recent death of Zhenya. Zhenya was a boy I loved and cared about, and I am saddened by his death. He was 11 years old and passed away from an epileptic seizure earlier this week.

Before I continue, I want to mention that I still firmly believe in the value and worth of all lives. However, the thought that this may be a better situation for Zhenya has been nagging at me with some insistence. Let me describe Zhenya’s daily life: He spent all day, every day, in the company of about 25 other disabled boys. Hours upon hours of free time were spent watching tv or being outside, depending on the weather; sometimes he would be lucky and a staff member or volunteer would take him for a walk. The hours of boredom would be broken up by meal times and the occasional afternoon nap. He frequently asked about his mom, who a nanny once told me lives in Zaporozhye and occasionally visited him. Zhenya always liked to have a toy in his hands, and he cried easily.

If Zhenya were still alive, the most likely scenario is that he’d spend another six to eight years in Kalinovka before being transferred to an institution for disabled and elderly adults. He’d find worse conditions and more neglect than at Kalinovka, and this would be where he stayed for the remainder of his life. This, after all, is the most common path a disabled person’s life takes in Ukraine. Instead, he has joined the other four hundred deceased children buried in mass graves in Kalinovka’s cemetery.

Do I really think that Zhenya is better off dead? No. With life, there is always hope. Conditions at Kalinovka are steadily improving, and it is becoming more common for parents to keep their disabled children rather than relinquish them to state care. Unfortunately, change is slow and thousands of children will die before their hopes of a better life will be realized.

I’m sure that I and plenty of others will continue to have this conversation, on one level or another. My hope is that someday, we will have fewer reasons to open a conversation in the same way that this one begins.”

Zhenya only looked serious – he was gentle as a butterfly. He never fought for my attention, he just wanted to walk holding hands. We celebrated Thanksgiving together days before he suffered a stroke. I remember he used to ask,
‘Where’s my mother?’. Wherever he is now, I like to imagine he’s happy and my mother is holding his hand – Maya. RIP Zhenya (August 13, 2001 – November 27, 2012)