How the mom of a child with Down Syndrome found a renewed perspective of God

Jodi was sitting in her church one Sunday with her husband and their four children, and she began looking around the large congregation. “All of a sudden I started to look around and I was like, where are the families that have kids with special needs? Why are we the only ones? And it felt really lonely.”

Their daughter Elle, 18, has Down Syndrome. “My initial thoughts and struggles were with that sense of like, I didn't know how to be a mom to her, which felt very strange already having two kids, but I felt extremely inadequate. I didn’t know anything about Down Syndrome.”

Elle also has epilepsy, which Jodi describes as an underlying unpredictability. “I don’t know when she’s going to have a seizure, and that’s hard,” she says.

Jodi ended up feeling isolated and alone in her church, at least in those initial years. “It felt pretty lonely when she was first born, but it also opened my eyes. And I realized it’s really hard and difficult for families that have kids with different challenges to come to church and to get support.”

Every morning, as soon as Jodi hears that Elle is awake, she gets up as well and helps with daily hygiene routines and such. When Elle was in her early teens, Jodi began to feel burned out. “It was a period of time, a few years ago where I did feel a little bit burdened. Like, why can’t I just have a morning where I could sleep in and not be worried?”

But it was through these years that God spoke to her. “God just opened my eyes to see what a gift it is that I actually get to do this,” she recalls. “Like, I get to love her and care for her and provide for her in a way that a lot of people don’t and I’m having joy in that. It’s beautiful.”

Jodi says that it has given her a new way of seeing God in his creation. “I think generally kids with disabilities are looked at as less than, like – like they’re missing a part of the image of God. She’s not missing part of the image of God. I actually think I’m struggling to understand what it means to be created in the image of God because of my strengths.”

She notes that 2 Corinthians 12 has been a significant passage in her life since Elle was born. “It brought me comfort to know that God’s grace is sufficient and that his power will shine through weakness. And so I would look at her and go, yeah, like God is going to shine through her. My daughter knows her limitations. She knows what she needs help with. So my daughter’s life has pointed to my understanding of humanity, which leads to the second important part, which I believe is our need to depend on God. If you can’t acknowledge your weaknesses as an inherent part of who you are, you’re going to fight against depending on God. And we try to be beautiful jars of clay that have no cracks, [that are] strong and beautiful. And then, [when] people look at us, they don’t look at Jesus shining through us. That diversity within humanity, it’s part of God’s good plan to point people to him.”

If you have a child with special needs, or know a family that is raising a child with special needs, we invite you to explore our series of resources.