Today is World Down Syndrome Day! It's a day to celebrate the lives of individuals with Down syndrome, raise awareness, and advocate for greater inclusion. A lot of people observe this day by wearing brightly colored mismatched socks. This might seem random and strange, but it's a tradition that started because chromosomes under a microscope look a bit like socks. Down syndrome is caused by having an extra copy of the 21st chromosome. Wearing fun, mismatched socks on this day is a great way to start conversations with other kids at school about celebrating the beauty of differences and understanding their peers with Down syndrome.
Learning the Basics
- Down syndrome is the most common chromosomal condition, occurring in about 1 in 700 births. It is not an illness or a disease; it is simply a genetic difference. People with Down syndrome have three copies of chromosome 21 instead of two, which impacts development in varying ways. There are three types of Down syndrome:
- Trisomy 21 (the most common, about 95% of cases): Every cell in the body has an extra copy of chromosome 21.
- Translocation Down syndrome (about 3-4% of cases): Part of chromosome 21 attaches to another chromosome.
- Mosaic Down syndrome (about 1-2% of cases): Some cells have the extra chromosome, while others do not, leading to a wider range of effects.
Our daughter Eden has Trisomy 21.
I've been really encouraged and grateful for a variety of voices out there sharing their stories of all of the possibilities and potential there can be for her that I think even 30 years ago wasn't as recognized. Lately I’ve been especially encouraged by following Ruby’s Rainbow on Instagram, an organization that highlights young adults with Down syndrome pursuing higher education and meaningful careers. Seeing stories of individuals going to college, working in fields they love, and living full, independent lives gives us hope and prayers to dream big for Eden's future.
When we first found out that our daughter had a 95% chance of having Down syndrome, we went through a whirlwind of emotions. People meant well in how they responded and we truly appreciated every outpouring of love, even if some things that were said weren't as helpful as others. We get it that we've all been in a place where someone gets hard news and we don't know what to say and have said things that might have been awkward because we felt awkward. So, if this was you, don't feel bad. There is much grace, but moving forward and learning from our experience, I thought it could be good to share.
What wasn’t helpful:
- Sharing stories of people who were told similar things in pregnancy but then their test results ended up being inaccurate and their baby was born without Down syndrome. That wasn’t where we needed to anchor our hope.
- Dismissing our emotions with quick reassurances like, "Oh, it doesn’t matter, she’ll be amazing!" We needed time to grieve the life we had initially imagined for her before embracing the beauty of the life she was given.
What was helpful:
- People who sat with us in our emotions and acknowledged the weight of what we were processing.
- Open-ended questions like, “What have you been feeling?” or “What have you been learning about Down syndrome?” instead of assuming how we should feel.
- Gentle reminders of God's goodness and invitation to lament and ground our hope in Gospel truths like Romans 8, and that our daughter’s life—though different than we first imagined—was still purposeful, beautiful, and worth celebrating.
- Sharing contact info for others who have walked through this journey and are a few steps ahead of us. This is helpful, but also, there have been so many contacts given that it's been initially a bit overwhelming and I haven't reached out to all of them yet, but I've still appreciated it. Just understand that it's something I can only reach out about in little bits at a time.
The Journey Forward
Now that Eden is here, the fears we once had feel much smaller. She is simply our daughter—the one we adore, the one who fills our home with joy, the one we are endlessly proud of. There are challenges, of course—extra therapies, medical appointments, and unknowns about her future. But there is also extraordinary joy. We are still learning what a gift it is to raise her and how God is using her life to shape us in ways we never expected.
We are still hit with grief at times and know that will continue to hit us in different ways as she gets older and her disabilities become more apparent—when we see the world misunderstand or underestimate her, or when we realize some doors may be harder for her to walk through. But we will also never stop enjoying and hoping in the unique ways she will impact the world, in the love and laughter she brings, and in the ways she will reflect the goodness of God.
And so, on this World Down Syndrome Day, we celebrate not just our daughter, but all individuals with Down syndrome. Their worth is not measured by what they contribute to society, but by the simple, beautiful truth that they are fearfully and wonderfully made.
I want to end with some quotes—words that remind us that human worth is not in what we can do, but in who we are as image-bearers of God:
"We are valuable not because of what we do, but because of who we are—image-bearers of the Creator. The weakest among us, those the world sees as ‘less than,’ reflect His glory in ways we may not yet understand." —Nancy Pearcey
"If the measure of a society is how it treats its most vulnerable, then we must see the inherent worth in every life, regardless of ability." —Unknown
"People with disabilities are not burdens to be managed. They are people to be loved. And in loving them, we become more human ourselves." —Joni Eareckson Tada
"Worth is not found in productivity, intelligence, or independence. It is found in the unshakable truth that every life is created by God, known by God, and loved by God." —Unknown
"We evaluate people’s worth in economic terms, but human dignity is not something we earn; it is something we are given. It is intrinsic and unshakable." —Nancy Pearcey
"Being pro-life means we value people not because of what they can do, but because of who they are. Every life is precious, even those the world deems weak or unimportant." —Unknown
"Every person, no matter how small or how disabled, is a unique reflection of God’s image, worthy of love and protection." —Nancy Pearcey
"A society that sees human worth as conditional—dependent on abilities, achievements, or independence—has lost sight of the reality that every life is a sacred gift." —Unknown
So today, wear your mismatched socks, share what you’ve learned, and celebrate the immeasurable worth of every single person with Down syndrome.
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