By Gillian Marchenko
It wasn’t my life plan to influence others in the world of special needs. But God saw fit to give me two daughters, Polly and Evangeline, with Down syndrome.
God reminds me often that I’m not in control.
So like you, I try to be faithful with the influence God has given me. I advocate for my kids. I collaborate with Joni and Friends, and Key Ministry to promote inclusion for individuals with special needs in the local church. I blog and write articles. I train churches on how to start a special needs ministry. I speak about helping children befriend others with disabilities. I talk about ways to support friends who find themselves on an island of disability. I help lead our church’s inclusive children’s ministry on Sunday mornings and our respite program on Thursday nights.
I do these things to honor the God given potential and beauty that exist in my girls. But I also do these things in an effort to step outside the shadow of myself. As I influence, I try to stay away from getting caught up in the grandeur of it all: “It’s awesome, my kids are awesome, life is awesome.”
At times, it is awesome to parent children with Down syndrome, but there are also times when it’s difficult. Often parents don’t think they can share the struggles of parenting special needs children while still advocating for their kids. But of course they can, and they should. Christians are notorious for stuffing unsavory emotions and struggles down into our guts.
Before long we become hardened and fake.
We start to live a shadow of the life God intended for us.
Or at least, I do.
So I try to be honest. There’s a part of me that is a room, and I get locked behind doors of depression, fear, and exhaustion. I fight not to live in the shadow of myself for the sake of my children, for me, and for God’s glory.
Honesty and authenticity helps. I talk about struggling to potty train my six- year-old daughters, days when I would rather stay in bed, and my un-Christian fear of the future that sits better with me when it hangs like a nebulous cloud off in the distance of my life. God has called me to acknowledge and validate the hard parts of parenting kids with special needs. Valuable lessons exist in these parts, much like the Gospel story of Jesus. If only part of Christ’s story were told—for example, his resurrection but not his death—the story would lose its power.
There are godly reasons for struggle and pain. And there is a blessing involved when we share with others, thus coming out from behind the shadow of who we pretend to be.
With God’s help, that’s how and where I want to influence the world. How about you?
Gillian Marchenko is a writer, speaker, advocate for special needs, and a mom to four daughters. Two of her daughters, Polly and Evangeline, have Down syndrome. To find out more about Gillian’s family, check out her website at www.gillianmarchenko.com or go to her facebook author page: https://www.facebook.com/GillianMarchenkoPage.