'A glimpse of heaven': Lessons we can learn from those with Down syndrome
There is something powerful about storytelling. Sally Lloyd-Jones, in her popular children’s Bible writes, “No, the Bible isn't a book of rules, or a book of heroes. The Bible is most of all a story. It's an adventure story about a young Hero who comes from a faraway country to win back his lost treasure. It's a love story about a brave Prince who leaves his palace, his throne — everything to rescue the one he loves. It's like the most wonderful of fairy tales that has come true in real life!
You see, the best thing about this Story is — it's true. There are lots of stories in the Bible, but all the stories are telling one Big Story. The Story of how God loves his children and comes to rescue them.”
I could share numbers and statistics of those living with Down syndrome and go into detail of the many health challenges facing the one in every thousand babies born with an additional chromosome 21. There are bullet point lists which can be shared about the financial realities of caring for someone with Down syndrome. With great soberness we could discuss the countless human lives sacrificed at the altar of abortion in the U.S. and around the world. Image bearers of God, these precious people living with Down syndrome need to be accepted as part of our society with dignity for the multitude of strengths they offer. We could grieve that countries like Greenland, through selective abortion procedures, have sought to eradicate Down syndrome from their society and been highly successful.
Get Our Latest News for FREE
However, instead of trying to prove through numbers, statistics and witty quips that those precious people living with Down syndrome are needed, I want to relay a story of a mom and her daughter.
When you talk with Stephanie, her eyes immediately tear up at the sound of her daughter’s name — Clementine Joy. “She’s like a glimpse of Heaven,” Stephanie will say. “She’s my best teacher. She has no filters and no fears of judgment. She just belly-flops into life.”
Eight years ago, no one could have expected the baby born with numerous health conditions — most notably, complete tracheal rings, a birth defect in the cartilage rings that keep the trachea, or windpipe, from collapsing — to teach a woman in Tennessee so much about how to live.
Stephanie and her husband, Chris, already had twelve children — eight who came home through adoption from China and four biological children. However, as the Leist family interacted with families who had children living with special needs, they felt increasingly led to adopt another child. Less than a year after completing the adoption forms for a little girl from China living with Down syndrome, they flew across the world to meet her.
“I’ve never felt so scared or ill-equipped or unworthy of doing what we needed to do as I did at that moment,” Stephanie says of her first encounter with Clementine. The day they were supposed to meet her, the girl was whisked away for urgent trachea surgery. “Gotcha day,” as many families frequently refer to when they talk about adoption day, came and went.
Finally, the three met, and everything changed.
“We immediately fell in love,” Stephanie says.
Fast forward eight years and Clementine Joy is thriving. So is Stephanie as she talks about parenting a child with special needs. Through Stephanie and Clementine’s story, here are three takeaways I believe all of us can learn from those living with special needs and God’s love for them:
First, we learn about mundane joy
“What was the best day of your life?” This is a question many of us have been asked at some point. We list milestones — graduations, weddings, births. But for those with Down syndrome, often what we see is something different — joy that sees beyond milestones and embraces the richness of each day.
“Until you see and live with a child with Downs, you are missing out,” Stephanie asserts. Recalling a time when she took Clementine to get a Coke, Stephanie says, “For Clementine, it was like Christmas morning … seeing the joy she had over that Coke and the straw she got to use.”
Genesis 1:27 tells us that we are all created in God’s image. Jeremiah 1:5 tells us that He formed us in the womb and knew and consecrated us, before we were born.
Those with special needs can teach us how to prioritize life, embrace the joy of every moment, and appreciate God’s plan for us.
Second, we learn unconditional forgiveness
Living out Christ’s mandate to forgive is a tall order. When we have been wronged, or someone has wronged someone we love, the last thing we want to do in our flesh is to forgive that person. As Stephanie talks about Clementine, she is quick to list one of her best qualities — forgiveness to the fullest.
“You can’t do wrong by her,” Stephanie says. “She’s always willing to forgive, embrace, and laugh. There’s no shifting shadows.”
In a world with much divisiveness and where lines in the sand have been drawn, an extended arm of forgiveness and kindness can be the best way to find our way back to health and wholeness, as families, as individuals and as a community. Those living with special needs can teach us how to move past the wrongs others have done and to embrace instead community and hope as we pursue life together. How rich is the love of Christ Jesus, that He forgave us while we were in the heinous act of sinning — how much then shall we forgive those who wrong us.
Third, we learn more about God's character
In talking about Clementine, Stephanie says something pretty radical: “She’s such a pure and genuine human being.” Those with special needs are who they are — there are no pretenses, no “shifting shadows.” Many live with a simplicity that leads those around them towards unexpected gratitude. This was true for Stephanie: “We are just grateful to behold it all and do life alongside her.”
Those with special needs remind us that we need not cower from the God who has made us. Those of us in Christ can approach his throne of grace with confidence with a pure heart and genuine love. We need not put on a face of courage when fear overcomes us; we need not smile when tears must flow but boldly come to the God who has made us in His image and uses us for His great purposes.
Final thoughts
Parenting children with Down syndrome isn’t easy. About 50% of all babies born with Down syndrome also have a congenital heart defect. They are at higher risk for hearing loss, sleep apnea, ear and eye diseases, intestinal blockages and much more. “It can be challenging parenting a child with Down syndrome,” Stephanie agrees. “Clementine has a lot of sensory fallout from her trachea collapsing and has breathing and feeding issues. For children with special needs, everything is harder to recover from.”
But the blessings — and important life lessons — far outweigh the challenges. The story of Stephanie and Clementine reminds us that we find the most important lessons in the most unexpected places. Stephanie has been introduced to joy, forgiveness and God’s character in ways few of us have. Clementine, and millions of others with special needs, can indeed be our best teachers — so let's advocate for their lives so we don’t miss the lessons.
Herbie Newell is the President of Lifeline Children’s Services, the largest Evangelical Christian adoption agency in the United States. The organization serves vulnerable children and families through private domestic and international adoption, family restoration, and pregnancy counseling. Herbie is also the author of Image Bearers: Shifting from Pro-Birth to Pro-Life.
