By Dean Smyth
I never realised just how much joy the arrival of a newborn brings to everyone who knows you. When our fourth son was born, Philippa and I named him Oscar. However, our joy changed to uncertainty when we received the unexpected diagnosis that Oscar had Down syndrome. Overnight, our trajectory shifted from ordinary family life to one filled with medical professionals, endless appointments, and constant questions – many without clear answers. We soon learned that the hospital’s information was outdated, confronting, and discouraging. Despite their good intentions, many staff lacked knowledge to help us.
In those early days, I remember feeling God being close. Family, friends, and even strangers surrounded us with kindness as we grappled with our new reality. I kept returning to the truth that God is love (1 John 4:8). My conclusion then, and still today, is that we live in a broken world (Rom. 8:20-23), yet God will one day make all things new (Rev. 21:1), including each one of us (Phil. 3:20-21; 1 Cor. 15:42-44). It was never God’s intention for Oscar to be born with a disability (Gen. 1:31; Deut. 32:4; Ps. 18:30; Ps. 145:17). Yet there are mysteries we cannot understand this side of eternity. Sometimes prayer goes unanswered, but suffering draws us closer to Jesus (Isa. 55:8-9; Deut. 29:29; 1 Cor. 13:12).
This year Oscar turned ten. He is healthy, full of life, and attends a satellite special needs class at our local primary school. Two years ago, he was diagnosed with autism, which explained why he is non-verbal, highly sensitive to loud noises and crowded spaces, loses skills he has previously mastered, still needs pull-ups at night, and finds transitions especially difficult. Getting ready in the morning can take fifteen minutes, or forty-five. The Māori word takiwatanga describes autism beautifully: in their own time and space. It recognises that autistic people experience and engage with the world in their own unique way and at their own pace. That certainly describes Oscar.
There are other challenges too, especially sleep. Every few nights Oscar wakes between 1 am and 3 am, turns on every light in the house, and is awake for the rest of the day. Sometimes he decides to bake muffins, and we come downstairs to broken eggs, spilt milk, and the oven turned on. Oscar has no sense of danger. He doesn’t understand road safety, stranger danger, heights, or hot ovens. He has happily invited real estate agents and door knockers into our home. Like many parents of special-needs children, it means we live in a state of constant alertness, our nervous systems going from zero to one hundred in a panicked heartbeat. Oscar has little understanding of money, time, or tomorrow. He lives entirely in the present. Although he is ten, his ability to understand his environment is that of a three-year-old.
What do we do when we find ourselves thrust into an unexpected journey marked by uncertainty, pain, and suffering? We pray. Sometimes nothing changes. Yet one question has shaped the way we engage: How would love respond? How would God have us value this life with care and dignity? What does unfailing love do in incredibly challenging times?
It sacrifices itself (1 Cor. 13:4–7).
For us, that means patience beyond practicality, accepting that we will often be late because, for Oscar, transitions are hard. It means showing kindness without anger despite Oscar’s lengthy refusals. Or giving thanks that Oscar has brothers who willingly accept that he sometimes needs special treatment. And remembering to ask for strength that helps us persevere through long, sleep-deprived weeks while hoping for a lighter day.
We celebrate what others might overlook: the day Oscar learned to fasten his own seatbelt in the backseat, or drink through a straw. They may seem like trivial victories, but to us they are massive.
Life with Oscar can be exhausting, difficult, and overwhelming, yet we choose to live in the messy middle. Some families isolate themselves because engaging with the outside world becomes too hard. Others try to live as though nothing has changed but then find that the pressure of raising a special needs child becomes overwhelming. We try to engage with life as much as we can within Oscar’s limits and our family’s overall capacity. Even then, it isn’t easy. We often take turns staying home with Oscar while the rest of the family attends gatherings or holidays involving flights. We persevere with church, where helpers provide support on some Sundays. Yet, Oscar is often overstimulated after only twenty minutes and comes home struggling for the remainder of the day.
There are beautiful moments too. Oscar has a simple faith. He has around thirty words, and one of them is “Jesus.” Whenever someone is hurt or wearing a bandage, he says, “Jesus.” He wants people to pray, and he prays too. I’m not sure how that works at school, but I’m sure the teachers know they’re expected to pray with him. Music is one of his greatest joys. Despite his sensory sensitivities, he loves it loud. Worship songs fill our car, and seeing Oscar lift his hands while singing “He Is Worthy of It All” is so precious. His words are muffled, and his pitch is questionable, but his worship is genuine.
God has used Oscar’s story to bring light into dark places. Philippa had the opportunity to rewrite the hospital’s Down syndrome information booklet, replacing fear with hope and celebrating the joy a new life brings. It is available in hospitals throughout New Zealand, helping families see dignity and value instead of despair. She also started online support groups, connecting families navigating similar paths. Those relationships open doors to conversations about abortion, adoption, suicide, broken relationships, and faith. I have prayed with fathers who are overwhelmed by the responsibility of caring for their families. Sometimes practical advice like take a break, ask for help, and care for yourself can be the first expression of God’s love. Love acts first, creating opportunities for the gospel.
Life-on-life relationships have a way of displacing fear as we speak the truth in love with hope for the future. That brings courage to keep going today. Sometimes Jesus makes the difficult parts of our story a source of hope, light, and strength for others who might otherwise be lost. When we experience suffering, loss, or overwhelming circumstances, we first find Jesus. Then we reach into the darkness, extending His light to others who are searching for hope.
