My child has Down syndrome, and I'm glad

October is Down Syndrome Awareness Month. It’s a time to share stories and bust myths about Trisomy 21. It also presents an opportunity for Christians.

What would you say if an acquaintance told you their child has Down syndrome? My baby girl has Trisomy 21 and I’ve found the conversation is almost always either positive or awkward.

Oh, wow! She’s lovely. We know someone with Down syndrome. What is her name? Or their mouth opens slightly as if words are about to come out, but they hesitate. Their face reads: What do I say?! Do I respond positively or with sympathy? Spare me this awkward situation!!!

I’d say I get this response half of the time and in equal measure from Christians. I’m not offended. In fact, I would have had the same response before I had my baby girl. The hesitation is a hangover from the days of institutionalisation. Unfortunately, ignorance and myths about Down syndrome are still prevalent in our society.

The good news is there is a strong grassroots advocacy movement happening in the Down syndrome community.

Before I had my baby girl, I considered myself fairly educated and compassionate, but now I regret my ignorance. My initial expectations weren’t informed by facts but by an ill-informed projection of Down syndrome and how it would impact my life. I wish I had been more educated.

The good news is there is a strong grassroots advocacy movement happening in the Down syndrome community. Over and again, parents share how their expectations have been smashed. Our baby has brought delight beyond comprehension; her sweet disposition is a revelation! Phrases like “help us change the narrative” and families heartily expressing that “we are the lucky few” are helping set the record straight.

As Christians, we must be informed about disability. However, we also need to move beyond just education and question our spiritual perception of people with disability. The Bible has much to say about disability, and Jesus’ compassion towards vulnerable and rejected people is profound. As we find our identity in Christ, we are called to love and value all people too.

This extra chromosome is not a tragedy but a variation in God’s creation worthy of celebration.

If we truly believe that every person is “fearfully and wonderfully made” as described in Psalm 139, what is our biblical understanding of disability? To realise that if we’re all made in God’s image, this is inherently true of all people with disabilities. Is a person with an extra chromosome a bit less made in God’s image? No! This extra chromosome is not a tragedy but a variation in God’s creation worthy of celebration. Regardless of the many or few medical challenges this child may encounter or the many or few years they might live, they are no less made in God’s image.

This world too often sees disability as undesirable, always aspiring for strength and success; however, God displays his glory in the weak and gives greater honour to the vulnerable.

It is one of the reasons I was delighted to discover Ellie Sanazaro’s book Image Bearer. It not only offers a way to explore and discuss disability with children, but it also offers parents a better understanding too. It beautifully and simply explores disability from a Biblical perspective. Sanazaro says she hopes her kids will “grow up believing that their value doesn’t come from their abilities but, rather, from a God who loves them and created them with purpose.”

Every person is precious, and every child, a gift.

My older children love the book too, not just because it includes characters with Trisomy 21, but because they also meet characters with a variety of disabilities, including cerebral palsy, epilepsy, hearing loss, vision loss, autism, spina bifida, Williams syndrome, Down syndrome, and Kniest syndrome.

The appendix has a blurb and picture of each child the character is based on. The kids won’t let me close the book until I’ve read each profile.

Perhaps Image Bearer will help give readers the language, confidence, and conviction to respond to the news of a Down syndrome pregnancy or birth with less hesitation and more enthusiasm, to more clearly see that every person is precious, and every child, a gift.