Elaina Marchenko gives a peek into the life as a special needs sibling. She discusses the different phases of her identity as it grew and changed during her life as a special needs sibling.
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Hi, I’m Elaina. I'm the Social Media Manager at Key Ministry. But I’m also a special needs sister. Today I am going to shift the focus over to special needs siblings. I hope that today’s podcast can give you a little bit of a different perspective and look into what it is like being a special needs sibling. Thanks for tuning in to Key Ministry the Podcast!
I have three younger sisters, two with special needs. Polina is 18 and has Down syndrome and moyamoya. Evie, who we adopted from Ukraine, is 17 and has a dual-diagnosis with autism and Down syndrome. Both are probably my favorite people in the world. Being a special needs sibling at 23 years old looks a lot different than it did when I was 16, or 10, or even 6-years old when Polina was born. Every new stage of my life brings new growth and new grief, and now that I am married and live far from home, it brings up a whole new set of challenges. Today I wanted to talk about the different facets of identity that come with being a special needs sister. It is hard to sum up in a short podcast, and by no means do I speak for everyone, but I will share some of my thoughts and hope that it can help you understand my perspective better.
Early in my life, when my sisters were new to our family, I would not say it affected my identity much at all. In my eyes, they were my sisters and that was that. I remember having a fierce love for them and feeling connected to them as any sister would. I was their playmate and role model, stepping naturally into my role as Big Sister, completely undeterred by all their therapy sessions, leg braces, and Signing Times Videos.
As I got older, and deeper into Elementary School, their disabilities became a bigger part of my world and vocabulary. I remember reading the book, We’ll Paint the Octopus Red by Stephanie Stuve-Bodeen to my 5th grade class, and talking about disability. It’s the first memory I have of actively advocating for my sisters. I began to grow into my role as an advocate, and not just a sister. I began to feel more like a mama bear, looking for anyone who may have something negative to say, ready to defend at any moment. But, I quickly learned that it's better not to go looking for trouble and instead just enjoy the time with my sisters.
Later in high school their disabilities took over a larger part of my identity. I began to look at what I wanted to do in College, and searched for who I would be. The Lord began to sew a deeper love and passion for those with disabilities in my heart. I served as an STM at Joni and Friends, and began working as a Respite Care worker with a boy with special needs. I found true joy in service and felt God leading me to do more. So I picked Wheaton College, hoping to make a difference and find what God had for me.
When I got to college, for the first time in my life I was truly alone and independent. I no longer had my sisters in tow, and knew almost nobody at my new school who had special needs. I remember looking around during chapel and meal times and being shocked that I saw nobody in attendance with visible disabilities. (Although we did have a number of individuals with disability on staff at our school, working at the food court and other jobs, which I thought was a very cool way to include them).
When I realized nobody knew anything about me, I gave myself a challenge: When someone asks me about myself, DO NOT SAY anything about my siblings with disability. The challenge was to actually tell people about MYSELF, not my family, not our list of diagnosis’ not the church my dad pastored or even the books my mom wrote. It was much harder than I expected, I realized my identity was lacking without the crutches of my family to lean on. That time in College was so formative and allowed me to figure out who really was.
I remember when I went into my interview for an internship placement for an overseas program, they asked me, “What kind of organization would you like to work with?” Before the interview, I repeated, “Don’t say disabilities, don’t say orphans, don’t say disabilities, don’t say orphans” over and over again, but when they asked me that question I blurted out, “I want to work with Special Needs…and orphans!” Go figure, couldn’t keep me away for long!
Once I was established at College, I was delighted to allow my family to trickle into my conversations and relationships when I chose them too. I loved having the freedom to explain them the way that I wanted too. I was blessed to make friends who love my sisters like I do, taking facetime calls to catch up on the gossip of Polina’s Barbies, or laughing at stories of Evie being cute.
These days, more than a year after I graduated from College and now being newly married and living in Mexico City, I still struggle to fully understand how to be a special needs sister from so far away. At times I feel guilt for not being closer to home, for not being able to step in and help. I also feel grief for missing things, missing milestones, new skills they are developing, and graduations. But I also have peace knowing that God never needed me, and he is more than capable to love and care for them. In fact, he is the best person to care for them, even including me. Plus, I have a feeling our time will come in the future for me to care for them when they are older.
I think I needed to be uprooted to form a healthy identity. I needed to be stripped of all that used to define me in order to learn more about who I am, and what God wants from me. I’m thankful for the journey. While the journey has twists and turns, and for better or worse, my sisters have deeply formed who I am. Polina teaches me about kindness, friendship, true conviction and steadfast love and faith. She is a role model for me. Evie teaches me about grace, the kingdom of God, peace, and joy. The reality is, without them, I would not be the same person I am today. While they cannot fully define my identity, the Lord has used them to bless and grow me. They have taught me more about the Kingdom of God than anyone else. All that to say, I think they’ve changed me for the better, and I look forward to continue being changed by them for the rest of my life.
Thanks for listening to Key Ministry, the Podcast. To find the written podcast episode, go to the show-notes at www.keyministry.org/podcast. Also, don’t forget our early bird ticket prices for our Mental Health & the Church Conference, September 26-27, in Cleveland, Ohio, are available now through July 31st. Go to www.keyministry.org/mhatc2024 to register now! Don’t forget to subscribe to our podcast so you don't miss any new episodes, and we will see you next week!
Elaina lives outside of Mexico City, with her husband, Abraham, and their puppy, Coba. She graduated from Wheaton College with a major in Biblical & Theological Studies, and a certificate in the Human Needs and Global Resources Program. She loves reading, spending time with family, and working at Key Ministry.
