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A Tribute to Elena and Her Wonderful Life

12/18/2024 - 2:18 pm | WSA Staff

A Tribute to Elena and Her Wonderful Life 
by 
Stefanka Kitanovska

On Nov 24, 2024, I lost my wonderful and amazing sister Elena. She was 45. 

How can I even start to describe who she was? She was a pure soul. She was honest to the bone. She was tender, loving and lovable. She was incredibly brave. She was funny and happy. She was a bright light illuminating everything around her. 

Elena was a gift to this world. I would not be the person I am today without her. I was 4.5 years old when she was born, and from that very first day, she made me a better person. She taught me humility, courage and kindness. We grew up in Yugoslavia (present day North Macedonia), a country with no support or societal acceptance for people with disabilities. Elena had to learn to deal with stares, comments, finger pointing and rejection, and I had to learn to stand prouder, taller and stronger next to her. When nobody would hire her, my mother opened a private business and gave Elena a job and proudly stood by her daughter-employee. After my mother retired, I took over the monthly financial support for my sister so that she would have money of her own. When Elena was struggling to make friends, my mother chose not to get a cell phone of her own thus setting up a process that any callers for my mother had to call and talk to Elena first, providing Elena with constant social interactions. My father would specially go and find rare flowers for her so she would feel special. We traveled to many counties with her, from Egypt and Turkey, to Sweden, Italy, Greece, UK and the US. We took Elena to concerts, theatre shows, and gave her books to read. We surrounded Elena with support, love and understanding, and we shielded her from the stresses of the world as much as possible. As a result, she was very happy and she flourished. 

We are very proud of her and how much she accomplished in her 45 years. In the past 7 years or so, she read two books per month on average. This simple act increased not only her vocabulary, but her understanding of the world. The combination of a supportive family, financial stability and culturally rich life gave Elena the ability to feel confidence in herself. The result was astonishing: she elevated her social intelligence well above an average non-WS person. This was evident in the fact that she made and maintained friendships of her own in her late 30s and 40s. She was able to hold deep conversations on mature topics. She was proud of herself and felt secure in who she was. She overcame her disability and became a fully mature adult.

While her mind continued to expand and grow, her WS body was aging. Elena’s heart health suddenly deteriorated. A heart surgery was attempted, but was not successful, and we lost this bright shining light in our lives. We miss her presence and laughter every single day. The grief we feel is still very strong. But we choose to celebrate Elena’s life. She lived life to the fullest. She was happy and smiling every single day. She was here, on this Earth with us, and she left a strong mark on all of us.

Rest in peace my sister, we will forever love you. 

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Position on Inclusion

The WSA upholds the following positions on inclusion. We believe that: 

  • everyone benefits when individuals with WS are meaningfully included in educational, work, and community settings 
  • individuals with WS should receive all necessary supports and services to fully participate in their family lives, communities, and society as a whole
  • high expectations should be the norm, and individuals with WS and their families should decide how they best learn, work, and enjoy social settings
  • “inclusion” is not one-size-fits-all, and will look different for each family based on each individual’s desires and needs
  • inclusion creates a sense of belonging in society, meaningful relationships, and opportunities to achieve dreams

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