Raising a child with disabilities in Bulgaria: A mother’s first-hand account

”I can find my life’s purpose and the secret of everything we are in Daraya’s eyes.”

By Vesela Semerdzhieva, Daraya’s mother
Дарая е написала на листче "Мамо, обичам те" и го показва на камерата
UNICEF Bulgaria/2019

24 June 2019

Kazanlak, Bulgaria – Daraya was born after a normal pregnancy. While I was pregnant, we didn’t know if we were expecting a girl or a boy and one day the name Daraya just popped into my mind—in Bulgarian, it means "a Gift from Heaven”. She is 7 years old and likes to chatter and to ask a lot of questions. She is a curious kid and is eager to have contact with children and grown-ups alike. Daraya likes to paint very much, she sings and speaks Russian but is too shy to demonstrate her talents. She likes to play with dolls and to spend time with her best friend Emi.

Being a parent is a real lesson in itself, a lesson you always think you are not ready for and there is always something that I discover about myself. You learn how to take on responsibility, how to guard and protect your child. I give my child freedom to find herself and at the same time I prepare her for the battle called ‘life’.

Each tear and each pain has been worth it and my kid is proud of me even if I ask for nothing in return.

I am an extremely straightforward parent and I call things by their real name so that she can be prepared for a life, which is not going to be easy. Only after Daraya was born, did we discover that she was having problems—Spina Bifida, Hydrocephalus, missing ribs and a hernia. I teach her to be stronger than me and my task as a parent of a child with disability is to make her independent; as her mom and dad are not always going to be around her to protect her.

 

Майката на Дарая я учи, докато Дарая е седнала на бюрото си с гръб към камерата.
UNICEF Bulgaria/2019

One of my favorite moments is when she hugs me close and whispers, ‘You are the best mom’ and ‘I am so happy you are my mom’.

Then I feel that all I have gone through is worth it. Each tear and pain is worth it and my kid is proud of me even if I ask for nothing in return. Is there a bigger reward for a parent than that? She is only 7 years old but thanks to the team working with her, she can read, write and count. This means so much for her—a whole new world, which is not scary at all, and she is fully prepared for her first day at school.

She is so positive that she doesn’t feel any different from the other kids.

 

Дарая се усмихва, седнала до майка си и баща си, докато майка й показва нейни снимки като малка.
UNICEF Bulgaria/2019

However, I don’t know if there are words which can express the pain we have felt. She has undergone five operations and each time it seemed to us that the world has stopped.

There are scars all over her body, which remind us every day of her fate, of her pain but, most importantly, of her enormous thirst for life and of her fighting spirit. At the age of four, she also suffered from bacterial meningitis; she managed to overcome the illness—but for two months we were constantly watching her struggle and had to get a large amount of her hair shaved and that was very shocking to her. As a parent, I didn’t know what else to say but to explain to her that she was my princess—with or without hair.

Bulgarian parents need support and guidance. No one speaks to us about the responsibility and about what lies ahead.

At the age of 5, the physicians repeated constantly that she will never walk and my dreams as a parent withered, despite the fact I believed in miracles… During the Christmas holiday she asked me to write a letter to Santa Claus and say that she wanted only one thing—batteries for her legs so that she could walk.

I cannot express the pain I felt while explaining to her that this is not going to happen, but this fact doesn’t make her any different from the other kids. Daraya loves her family, loves to spend time with us, to remind us how much she loves us and how she can’t live without us. We love to travel, to go on walks and we are most happy when we are together. 

Дарая е прегърнала майка си и баща си и се усмихва на камерата.
UNICEF Bulgaria/2019

In my opinion, Bulgarian parents need support and guidance.

No one speaks to us about the responsibility and about what lies ahead. Parents need to feel supported and to speak out their fears because I think that everyone is scared whether she or he can bear the responsibility. This is why parents need to be given proper guidance, to be shown things from different viewpoints, to be supported in order to raise their child in the best way possible.

We, as parents of a child with a disability, didn’t receive any support or information on what awaits us, but I am more scared by what I see in the eyes of other children—they don’t seem to understand that there are some children who are “more special”, some children like Daraya ...

If I have to summarize everything, over these 7 years I learned that I am very strong and that when things get too tough, I can find my life’s purpose and the secret of everything we are in Daraya’s eyes—parents’ love and child’s purity, combined into one! 

This story told from the first person perspective is part of UNICEF Bulgaria’s Parenting Month Initiative.

Дарая седи на бюрото си и гледа тъжно надолу
UNICEF Bulgaria/2019