What Having a Baby with Down Syndrome Taught Me About Distraction, Fear, and Love

Down syndrome Fear Love

When our daughter was diagnosed with Down syndrome, we felt fear for her future, but love carried us all.

I’m increasingly convinced that one of the things that keeps us from receiving and participating in God’s love is distraction. Or at least, we miss the invitation to love and be loved because far too often we are paying attention to the wrong things. My attention flits from a text message to a tv show to the to-do list to my concerns about our kids’ eating habits, and God becomes abstract, love becomes vague and sentimental, and the future becomes a place crowded with worry and busyness rather than hope. 

Down Syndrome, Fear, and Love

When thinking about the way my attention can so easily go to frivolous, meaningless, or harmful things, I was reminded of the first few days after Penny was born and diagnosed with Down syndrome. Throughout that time, Penny was often taken out of the room for tests. Whenever she was away, we were flooded with fear for her future, doubts about our capabilities as parents, and even questions about our love for her. But we noticed that every time she was in our arms, the fear dissipated. 

When Penny was out of the room, she became an abstract diagnosis, a set of fears and scary possibilities on a list about Down syndrome. When she was in the room, she was simply our baby girl. Our adorable, big-eyed, sweet, needy, baby girl. When we paid attention to her in the present moment, love carried us all

Love Counters Fear

I’ve returned to that time in the hospital on every occasion when I get scared about Penny’s future. Those moments taught me to counter fear by returning to who she is right now, returning to our love for her right now, returning to her delightful, friendly, witty, gentle presence right now, and even returning to the challenges and worries we have right now. Turning my attention to who she is instead of what might happen helps me return to love instead of fear. 

There’s a truth embedded in this story that goes beyond advice for other parents who get trapped in worry about the future. For me to love Penny instead of fearing for Penny means I need to pay attention and be present to her.

Pay Attention in Order to Love

For me to love any human being in my life means I need to pay attention:

I need to pay attention to my own needs for rest, for food, for friendship, in order to love myself.

I need to put down my phone and listen to Marilee talk about her day in order to love her.

I need to listen to the needs of my community in order to love my neighbor.  

Similarly, for me to receive and participate in the love of God means I need to pay attention and be present to that same love. My phone, my to-do list, my worries and doubts—they invite me to pay attention to fear. But God invites me to pay attention to love, to receive love, to return, day after day, moment after moment, to the constant and eternal reality of God’s relentless love for us. 

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Hi, I’m Amy Julia.

I write about faith, family, disability, and privilege.

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