Exchanging fear for joy in a Down syndrome diagnosis

Down syndrome is misunderstood. My flowing tears after receiving the diagnosis for my own child revealed my assumptions about Down syndrome. I knew the physical features of Down syndrome, so my child would visually stand out. Growing up the kids with Down syndrome were in special education classrooms, so I knew there would be some sort of intellectual disability. I knew people chose to end their pregnancy based on this diagnosis alone. I had heard other moms express how scared they were as they waited for their prenatal results of the Down syndrome test and how relieved when it came back negative. Armed with this knowledge the only logical response is fear and grief. 

But this focuses on all the wrong things. Yes, Harper is different than most of her peers. But different does not equal bad. It’s just different. And in just a short two and half years she is showing me and those she comes into contact with that she brings a lot of good into this world. And isn’t that what we really want after all? 

Creating community wherever she goes

“Harper brings people together,” my oldest niece paused from the rambunctious playing with her cousins and spoke this profound statement. What’s ironic is this gathering that brought both sides of our family together was for Harper’s brother. So technically the reason we were together had nothing to do with Harper. But my niece recognized something cool. 

Harper has an innate ability to create community. She absolutely loves people. While she is working on expressing this desire to connect in a better way than yelling at other kids on the playground, her heart and desire are aligned with something we all need. 

Nothing quite like a low tone hug  

People with Down syndrome have low muscle tone, it’s the reason behind why it takes them longer to learn how to sit, walk and even talk – your tongue is a muscle. But it’s a positive when it comes to hugs. It touches your soul like a weighted blanket, the perfect balance of pressure, weight and coziness. 

There’s nothing quite like a low tone hug. Even better is Harper’s hug marathon, where she runs back and forth between people giving hugs over and over again. This sweet expression of love softens whatever stress or worry the day brings. 

Focusing on what really matters

It can be so easy to get caught up in what society deems as successful or fulfilling, but Harper challenges me to think about what really matters in life. At the end of the day I think most parents want their kids to be happy and fulfilled. And a Down syndrome diagnosis does not end that dream. In fact a survey found that 99% of people with Down syndrome indicated they are happy with their lives. What an encouraging stat juxtaposed against the typically shared limitations of a person with Down syndrome. 

When I look at Harper now, I already see pure happiness. I see it when she cheers for herself after stacking blocks. This sense of celebration with even the simplest accomplishments brings so much joy into the world.

A sweet connection with God

When we pray before a meal, Harper babbles along. And I know God hears and knows her perfectly. Seeing the beginnings of her praying and learning songs about God, I have so much hope that her joy won’t be as easily extinguished as she grows older. I have confidence that my God can connect with Harper and that is what matters most. 

October is Down syndrome awareness month and I want to echo the sentiment of my fellow parents with children with Down syndrome. They belong. They are here to teach us to treat each other with kindness and respect no matter what. Just because it’s different doesn’t mean it is bad. 

This is Down syndrome. Once you come to know it, you realize there is nothing to fear.