I am the oldest sister to three girls, two of whom have special needs. One of my sisters, Polly, has Down syndrome and Moyamoya, while my other sister Evie has Down syndrome and autism. Zoya, my typical sister, is eighteen months younger than me and my closest friend. We have been best friends our whole lives, whether we liked it or not.
The Marchenko Family.
Being Polly and Evie’s older sister has irrevocably altered and solidified the way I see the world and the way I live my life. I am unable to live in a way that is not somehow defined by my upbringing. I have been let in on the magic of life alongside those with special needs, and there is no off switch for that magic. Polly is a kind soul who laughs loudly and often tells knock-knock jokes with no punchlines. She sings so the neighbors can hear, prays persistently, and loves deeper than anybody else I know. Polly lives inside the lines of her life—doing what she is capable of and allowed to do. She sings one song a week at church, practicing all week in her room, and anxiously waiting for her turn to go on stage on Sunday morning. She lives a life mainly directed by others, but she is more joyful than the majority of people I have met. She is entitled to her freedom, but chained to her dependence. She is light and generously shines on anyone and everyone around her. Polly is not selfish with her joy.
Evie is content on her swing outside for hours at a time, indifferent to the weather. She is skeptical and observant and I often wonder what she is thinking. She sees the world in ways I can’t, and I long to see things from her eyes. She is tough, but really just wants to be loved like the rest of us. She has taught me about unconditional love and how to love someone who doesn’t always act like they love you back. Her eyes are light blue as they sneak looks at me, trying not to be caught in unintentional eye contact that is too intimate for her. Her autism fractures her connections with us, but I value every single smile she gives me. I know they are costly for her to risk giving to me. God has used Evie to showcase His love and the power of the gospel every day. The Lord redeems her story in front of my eyes.
We grew up with the same parents, same houses, same churches, but such different perspectives. And yes, I can easily write a thousand articles on the hard parts. It was hard not only being a sister, but also acting as a parent would, worrying like a parent, and even changing diapers. Often there was lots of embarrassment and stress involved in family events or activities, and I’m pretty sure we haven’t taken a family photo in about seven years (if you know how hard family photos are, you will understand). The worry keeps me up at night about their futures and every step of independence I take hurts a little bit because I am reminded of their lack of independence. But I am not angry with God for these circumstances, I am not confused. This is glorifying. Hard things are glorifying, and being a sibling to two girls affected by special needs has shown me Jesus clearly and unapologetically.
There is trauma, there is pain and years of hurt, feelings of neglect or smushing myself into the box of being the “easy kid.” These things are intertwined with my upbringing. I’ve been to therapy for it, I’ve cried over it, I’ve yelled about it. But I can honestly say that there is no other way I would want to experience life. I see this as a kindness and mercy from God Himself. He has given me these special people with special needs to remind me of His grace and His character. I am convinced God’s hand is completely at work in this and for that I am thankful. That is what it means to me, to be a sibling.
Elaina Marchenko is entering her junior year at Wheaton College in Illinois. She is a Bible and Theology major who loves talking about God and hearing about how God is working in other people's lives. Elaina is a sibling to two with special needs and is passionate about special needs ministry and inclusion at the local church. She believes that every person should be exposed and discipled in the gospel, including those affected by special needs.
