Will Down Syndrome Be In Heaven?

A few months ago my ten year-old asked, “Will Sam have Down syndrome in heaven?” I didn’t know then and still don’t know the answer to that but I have a few thoughts. 

As a person who claims a faith that is rooted in both the deity and humanity of Jesus, my understanding of this topic is filtered through the lens of God in the flesh, as depicted in the Bible. 

I believe our world was created wholly good, until sin entered and all of creation suffered for it. 

I believe there is a present and future hope: Hope that humans can be reconciled to God by grace through faith and hope that one day what was ruined by human fault will be made right by Divine love. What was broken will be restored. The Creator will make new what humans have destroyed in our quest for power and affluence.

I believe we live in a tension marked by the pain of both past and present sin and the hope of future restoration, which we have a responsibility to work toward even now: “Thy Kingdom come, Thy will be done on earth as it is in heaven.”

Believing that the redemption of people and planets will not be fully realized until Christ returns to make all things new, I have wrestled with this idea of restoration, this ‘making right’ what is wrong, especially in the context of disability and neurodiversity.

Jude’s initial question led to even more questions, of which I’m still wrestling. 

Is Down syndrome a result of our broken world? 

Is it an imperfection to be perfected?

Is it a condition from which Sam needs ‘healed’? 

Does it make Sam less than whole? 

By whose standards are we measuring ‘whole’?

I’m not convinced the answers are as clear as we might expect. Certainly, there are concerns that come with Down syndrome but there is so much beauty, so much goodness. How do I separate his GI needs from his gorgeous eyes that disappear when he smiles? His learning difficulties from his deep interest in music? His communication frustrations from his inability to speak an unkind word?

In heaven, will Sam possess only parts of Down syndrome, those that don’t include his struggles to communicate, his hearing deficits, his GI complexities, his compromised immune system? Where does his personhood separate from his struggle? Can they–should they–even be separated? Is struggling inherently bad?  

In New Testament, Middle Eastern Jewish culture, people with physical ailments or disabilities or those without a sound mind or any other condition that did not exist within cultural norms were sent outside the city gates. Whether blind, deaf, mute, demon-possessed, or paralyzed, people with any sort of (perceived) mental or physical ailment or limitation were considered untouchable. They had no voice unless someone took the time to listen or someone with power spoke on their behalf. This population was often poor, unable to work, and ignored by able-bodied, neurotypical culture, yet Jesus assured them of their belonging in his Kingdom–with or without healing.

Many places around the world still hold to a harmful, antiquated perspective where those with disabilities are considered outcasts. While our American culture doesn’t exactly reflect ancient Middle Eastern culture, the practice of ‘casting out’ from society those whose minds and bodies work differently from the societal norm, is part of our dark history and remains true in many ways today. You can read more specifics on that here.

Many of you know that parenting is not a simple road and parenting a child with any kind of medical diagnosis less so. Down syndrome brings with it potential concerns, from speech delays and cardiac concerns to an increased risk for serious medical conditions like Leukemia and T1 Diabetes. It may also bring hospital stays, Autism Spectrum Disorder, and particular social behaviors that can feel overwhelming for many families. Down syndrome certainly doesn’t prevent Sam from participating or thriving or shattering stereotypes but it does impact how he learns and grows and engages with others. He works so hard to grasp what comes so naturally to his typical peers and siblings. While I certainly don’t begrudge delays or medical conditions, I often consider how they might affect his future relationships and opportunities.

Based on my understanding of heaven as a place in which all will be made well and whole, then I believe all of us–with or without Ds–who live with pain and suffering will be healed. I’m just not sure those with Down syndrome will exist there without their extra chromosome.

I believe Sam was made with purpose, precision, and intricate detail. I believe our Creator makes no mistakes and yet Sam has required one life-saving surgery, two minor surgeries, countless visits to doctors and specialists, PT/OT/ST visits, IEPs, GI interventions, and multiple medications to keep his airway and nasal passages open. 

These realities don’t imply that Trisomy 21 is the result of sin. Maybe they simply reveal the sin of a culture that views Down syndrome as a problem to be terminated, ignored, rejected, and fixed rather than welcomed, embraced, supported, and celebrated. Maybe in our human need to categorize and label others for our own sense of security, we’ve established certain standards as ‘typical’ or ‘normal’ and anything that exists outside of that needs rejected or twisted and morphed to fit inside our man made, socially acceptable box. 

Maybe we need to rethink our incessant need to design systems and social norms that ‘force’ kids like Sam to meet specific human standards in our attempts to make him more like everyone else–for our benefit. Maybe we need to spend more time designing a better system instead of fixating on the old one, where disability and neurodiversity are problems to be solved and reasons to exclude. Maybe Sam is whole in ways his typical peers are not.

When heaven calls, I believe Sam will be healed of the physical complications his body endures and the communication frustrations that feel impossible for him some days. I do believe however, that his life–and ours–would be far less abundant without that extra chromosome. It is part of his personhood, his uniqueness, his gifts. I may be wrong but I cannot imagine our personal and creative God unraveling an extra chromosome that is so intricately woven into the DNA of my beloved boy who reflects the image of a God who adores him. How could any future beyond the grave be wholly good without it?

Featured image: Aakanksha Panwar at Unsplash

All other photos by https://www.richellegregoryphotography.com/