Down syndrome impacts me everyday. It affects my decisions, my chores, my schedule, even my life insurance policy—you should see the bill that just arrived. But our son’s disability has become such a normal part of life that I don’t think about it everyday. He’s just my son, a delightful addition to our family, and one of the greatest kids around.
In the early days of his diagnosis, I thought about the impacts of Down syndrome constantly. We had questions and no answers, fears and no certain outcomes. I would hold my baby boy, trace the lines on his chubby hands, and pray. For his growth and development. For protection from a world who might seek to harm or belittle him. I prayed we would know how to give him a normal life. My love for him was—and is—fierce.
Eventually we settled into therapy, learned how to navigate developmental delays, and celebrated every single milestone. He sat up, walked, talked, and went to school. There were still moments of fear. I grieved the challenges he faced over what came naturally to his non-disabled siblings. But we accepted the realities of disability and life moved on.
Yet over the past year, with schools closed, no therapy assistance, and no special education, I’ve experienced the challenging realities of his disability everyday. As his Mom/teacher/therapist, I often feel exhausted, discouraged, and defeated. In many ways, the grief I felt in those early days has resurfaced. Multiple times over the past several months, I’ve cried out in anguish to the Lord: I don’t like Down syndrome.
Admitting this feels uncomfortable because I realize how countercultural it can sound. Over the past eight years I’ve struggled with feelings of guilt over the fact that I grieve my son’s diagnosis. I’m not always sure how to express my grief and I wonder if it’s okay to feel sad. I love my son, I’m grateful for his life, and I delight in my role as his Mom. But I don’t want him to struggle. I want him to experience wholeness and normal function. When he doesn’t, I ache over what he’s missing.
Do we celebrate disability?
On a day like World Down Syndrome Day, when we pause to celebrate people with an extra chromosome like my son’s, I can’t help but ask: What are we celebrating? Do we celebrate the disability? These are the questions I struggle to answer every year on March 21. I don’t always know how to respond when hashtags like #theluckyfew and #downsyndromelove flood my social media feeds. I love to read stories about people with Down syndrome who go to college and thrive in their jobs. It moves me to tears because of course we should celebrate their achievements. I hope my son will experience these things one day too.
But it doesn’t always feel lucky to watch your child struggle. I don’t love the challenges that accompany Down syndrome. My son often feels frustrated because his disability hinders him from what he wants to do. We are often frustrated because we can’t understand what our son is trying to tell us.
If Jesus healed lepers, gave sight to the blind, and caused the lame to walk, then surely these things are not the way he intended. Why would he restore something that didn’t need to be restored?
God created a good world but when man rebelled against God, the world became broken (Genesis 3:15-19). The effects of sin impact every plant, ocean, animal, human being, and human soul. Every physical, emotional, relational, and spiritual ache we feel exist because of sin. Every bit of creation groans for the day when God restores the brokenness of this world (Romans 8:21-22).
Just like I groan when our family gets a stomach bug or my knees ache after a run or the weeds take over my flower beds or someone I love dies, I groan when life is hard for my son. When he can’t put on his socks and shoes at eight years old, I want to take away his frustration. As I watch him struggle to articulate his thoughts, I wish I could untangle his tongue. When using the bathroom is an ongoing daily battle, I want to help him progress more quickly. If I could erase the challenges that accompany Down syndrome, I would yank that extra chromosome right out of his body.
But I’m not God.
So, I take my grief to the Lord, cry, wipe my face, and move forward by faith. And I might do it again tomorrow or when we face another developmental delay five years from now. We don’t celebrate the disability. But we do celebrate the God of all wisdom who allowed the disability.
As I continue to wade through the grief of raising a child with special needs, it’s been helpful for me to think about disability from God’s perspective. And as I continue to grow in my understanding of God and his word, the guilt over my grief surrounding disability has lessened. I’ve learned how to grieve appropriately, but I’ve also learned how to celebrate exuberantly.
So today, on World Down Syndrome Day, I’d like to invite you to celebrate with me. We have much to celebrate.
We celebrate the gift of life.
An extra chromosome in your genetic code doesn’t diminish your worth in God’s eyes—no disability does. Every human life is fearfully and wonderfully made (Ps 139:14). We value life because we value the Giver and Author of life. And we agree with God’s declaration of goodness over all who are created in his image (Genesis 2:7).
We celebrate the diversity of life when we value all of God’s image bearers, regardless of race, ability, or disability. As God’s image bearers, we have the privilege and responsibility of upholding the dignity of every human life. And we do this each time we advocate for our son in the public school system or treat him just as we do our other children. We respect the life of a person with a disability when we slow down, listen, and include them in our conversations. In these seemingly small ways, we proclaim to the world: people with disabilities are worthy of dignity, honor, respect, and love.
I can’t fully describe my son in a single blog post, but I can tell you he’s delightful. There are things about his personality that shine because he has Down syndrome. Would we have known these things about him without his disability? Perhaps. But I believe we see his compassion, tenderness, and fervor more clearly because of it. When he loves something or someone, he’s all in, and his excitement teaches me to delight in the small things. I love to watch the world through his eyes and I’m better because of it. Scott Sauls, writing of his friends with Down syndrome stated beautifully:
“Oh, how we need the William’s and Cade’s and Katie’s of the world to help us see the world, help us see God, and help us see reality, through their eyes.”Sauls, Scott. “Befriend Those With Disabilities”. The Gospel Coalition, 25 Oct., 2016, www.thegospelcoalition.org/article/befriend-those-with-disabilities-and-special-needs/
God gave my son life and it’s good because he’s made in God’s image. We celebrate who he is, and what God will accomplish in and through his life.
We celebrate the gift of God’s glory.
Shortly after our son was born, I heard a sermon on John chapter nine, where Jesus heals a man born blind. I immediately wanted to storm out of the sanctuary that day. No amount of therapy, prayer, or time could erase an extra chromosome from my son’s genetic code. Down syndrome was permanent.
I didn’t leave, and I’m glad. God didn’t erase the pain of my grief but he did give me fresh hope and a new prayer. When the disciples asked why the man had been born blind, Jesus replied: “that the works of God might be displayed in him” (John 9:3). Yes, Jesus performed a miracle by renewing the man’s sight, but the greater miracle? Jesus was able to make it happen. Jesus revealed his divine power in this man’s life. Could he do the same for my son? I began begging God to show me his glory through my son’s life. And let me tell you, God has answered this prayer in a million little ways.
My son’s life demonstrates God’s glory to the world because God’s power is made perfect in weakness. My son may not have the same abilities as his five year old brother, but when he overcomes the impossible—like rolling over, speaking full sentences, and one day hopefully reading—it’s nothing short of a miracle. Every time he makes progress in his development, I stand in awe of the wonder and majesty of God’s power.
My son’s life helps me understand the glory of God’s upside down kingdom. Because the world elevates perfection and power, it seeks to eliminate those who are considered imperfect or powerless. As I witness the life of someone the world may consider unworthy, I’m able to see a clear distinction. God’s kingdom is in direct opposition to the kingdom of this world. His kingdom is one of lowliness rather than power, humility over arrogance, and sacrifice over self-glorification. God’s love isn’t reserved for those who are powerful or capable. God demonstrated his love for us at the cross and it is available for all who believe. God used what the world considered foolish to bring about our redemption (1 Cor 1:27-28). Our greatest boast is in the power of the cross. This makes no sense. But it is the very essence of wisdom in God’s kingdom.
I don’t pretend to understand why God allows disability, but I do know he displays his glory in our suffering. For it’s in hardship, challenges, and grief when we grow to know God more. Maybe not at first, but as our faith increases, God uses suffering to produce in us character, perseverance, and hope. Through suffering we come to know Christ more as we share in his suffering. And we grow to long for heaven like never before. When I see my son suffer, I yearn for Jesus to return and make all things new. Will there be Down syndrome in heaven? I don’t know, but if there is, it won’t be accompanied by hardship.
I can’t wait for the day when the struggles associated with Down syndrome disappear. The sure hope of heaven helps me to look beyond what is toward what will be. And the vision of my son falling at Jesus’ feet, and joining with the saints with unhindered speech before his throne, well now, that is something to celebrate.