Honestly, for some months now, I’ve been wanting to sit down and write out some thoughts about Eden’s Down syndrome diagnosis that I’ve been wrestling through since she was born. There have been a lot of stops and starts.
Towards the end of last December, I announced that we were expecting in a long post about all we were walking through at the time. We learned, all in one day, that my husband Will might have had lung cancer and that my NIPT test results showed Eden had a 95% chance of being born with Trisomy 21, a form of Down syndrome.
Will does NOT have cancer. He is doing so much better now.
Eden does have Down syndrome.
We love our sweet Eden bug SO much, Down syndrome and all. We can’t imagine our lives without her now. It’s giving me so much joy to get to be her mom, and she has Will wrapped around her finger. She is SUCH a gift to us.
But I’d be lying if I said her Down syndrome wasn’t something we have grieved, even as we celebrate the priceless treasure she is to us. I don’t want Eden to have cognitive and physical struggles or be made fun of or feel lonely or unincluded. I don’t want her to have to go through lots of therapy to reach her developmental milestones. I don’t want to potentially never have an empty nest, for Will to never get to walk her down the aisle, and a thousand other things.
Familiar Yet New
Down syndrome isn’t new to me. For most of my life, I’ve had the gift of my sweet cousin Lydia and watched her grow into adulthood. She brings my family so much joy and is so loved by many great friends. But I’ve also seen the challenges she faces, and I wish she didn’t have to have them.
Yesterday morning in church, we were singing The Goodness of God. As I thought about the lyrics, so many scenes from really hard and really good seasons of the years played through my mind like movie reels.
In ways that feel so sacred and personal that only He fully sees, I have known His goodness both in the darkest and dearest nights of my soul. Some of my sweetest, richest memories of worship are the ones that felt like defiance against despair at the time.
Underneath pretty much every line in that song, there are memories of tender intimacy in the ways He has cared for my heart over the years.
Wrestling with the Gospel and Disability
Not only during this October month of Down syndrome awareness, but really since before Eden was born, I’ve been so grateful for all of the social media posts out there helping to educate about Down syndrome. There are TONS of amazing, encouraging, hopeful IG accounts to follow that celebrate and show the value and goodness that individuals with Down syndrome bring to our world.
It’s a beautiful thing to see the online pendulum swinging towards a movement that shouts the worth of individuals with Down syndrome.
But honestly, some of the messages I’m hearing in this world of disability feel incomplete to me.
Statements like:
- “Down syndrome has never been the problem. The problem is everyone else not seeing and including my child.”
- “Down syndrome rocks, is awesome, etc.”
- “I wouldn’t want a world without Down syndrome.”
These statements seem to gloss over the sadness of real losses. The cognitive and physical difficulties of having an extra chromosome ARE sad, even as we celebrate the beauty and worth of those with Down syndrome.
It’s okay for two things to be true at once:
- Down syndrome causes real challenges.
- Down syndrome also brings beauty and purpose.
The Gospel as My Ultimate Hope
Genetic disorders aren’t how things were created or meant to be. But Jesus’ life and death shout the worth of individuals with Down syndrome. He is restoring and will one day make all things new.
Romans 8:18-25 has given me a framework for thinking about Eden’s Down syndrome with defiant hope and peaceful gratitude. One day, everything sad will become untrue.
Until then, every individual uniquely reflects God’s beauty, goodness, and joy.
Down syndrome isn’t just a sad loss to grieve. Like the man in John 9 who was born blind, Down syndrome also has profound purpose. It’s a beautiful part of how God is uniquely crafting our sweet Eden’s life to make much of Him.
Remembering His Goodness
For this October Down syndrome awareness month, I not only want to shout our daughter’s worth but also the goodness of our God. His goodness will keep running after us—in the form of our precious Eden.
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