Updated: Apr 5
As soon as it was confirmed that the baby I was carrying had Down syndrome, I began praying for God to heal her. I never anticipated that God wanted to heal me instead.
Recently, an advocate for people with Down syndrome shared on social media about a woman who was praying for her baby to be healed, and how she understood, but she wished the mother-to-be wouldn't look at Down syndrome as a negative condition to be fixed. I read her words and the comments that followed and thought yes, yes...why would anyone want to 'fix' a child with Down syndrome? But wait...didn't I also pray for healing during my pregnancy? It brought back a flood of memories.
I was pregnant during the Easter season and was in church every opportunity I could get. I took the bread and juice of communion and prayed fervently "God, I know you can heal her if it's your will." I fully anticipated a healthy baby to arrive in May, even though an amniocentesis had confirmed Marianna had three copies of the 21st chromosome, which is called trisomy 21 or Down syndrome. Even after she was born, I asked the pediatrician to count the chromosomes again, just in case.
Not too long after Marianna arrived, I proudly stated I wouldn't change a thing about her, not even her Down syndrome. But by the time she was four years old and also showing some signs of autism, I began to feel the effects of being excluded. Everything we did was difficult for me and for her. Going to a restaurant, finding a preschool, participating in extracurricular activities, church, childcare, even meeting up with our friends who also had Down syndrome was often a struggle. Marianna did not fit into the norms that society expected of her, and I got many battle scars from fighting for us to fit in together. I was focused on the hard, yet God continued to speak to me about the good.
Through my studies on Christian theology, I began to change my views of disability as suffering. I researched a Christ centered liberation theology from a disability perspective, and realized how my own sins of perfectionism and self-sufficiency were contributing to the oppression of people with disabilities. Instead of trying to fit Marianna into my world, I started to think more about what I appreciate about hers.
When I was pregnant with Marianna, I didn't realize the gift I had growing within me. She has taught me the beauty of finding your value in Christ, not in what you can or cannot do. Marianna is content with herself and who God created her to be. This is just one of so many life lessons I've learned from my daughter. Sadly, most people miss out on this blessing because they don't take the time to form a meaningful and lasting friendship with someone like her. I probably wouldn't have done so either, so I'm thankful God knew what we needed and placed her in our family.
I'm sharing more on this topic from my research "A Theology of Inclusion in the Body of Christ" at a national conference on disability ministry this April in Cleveland. Follow me on social at Myra Monroe Carr for more on the conversation, and follow @mariannasministry on Instagram to see Marianna's beautiful artwork. We are thankful for your friendship and glad you are on this journey with us!