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Perfectly Human: Reflections on Seven Years with my Daughter with Down syndromeWhy one mother now prays for strength and weakness
Perfectly Human: Reflections on Seven Years with my Daughter with Down syndrome

It's a bright Sunday afternoon at the park. My youngest daughter Evangeline giggles in an adaptive swing while her dad dutifully pushes her back and forth. We adopted Evangeline, who has Down syndrome and autism, from Ukraine. Elaina and Zoya, our two older girls, with adult-like bodies but childlike hearts, swoop and slide on the monkey bars. I shadow Polly, who also has Down syndrome, to make sure she doesn't get hurt, to help her if she asks.

An elevated Chicago train rumbles above us along the perimeter of the park. I turn to watch it push forward for a moment. The sun blinds my eyes. I look down at my shoes.

My head raises and I glance around for Polly, who seized the opportunity to rush to another activity while her mom was momentarily preoccupied.

"Polly, where are you?" I call.

"Over here, Mom. I'm here."


I turn around in place. I don't see her.


Her voice comes from above. The knotted rope ladder to my right shakes, and I catch sight of my daughter's blue and green Velcro tennis shoes command the ropes as she scurries up.

I had no idea she could climb like that, sure-footed, easily, without any help, on weaving ropes that bend and rock as she moves.

Polly is seven years old.

She has hypotonia, a fancy word for low muscle tone, a fairly common occurrence in people affected by Down syndrome. Her gross motor skills—crawling, standing, and walking—proved slow coming and painstaking in her development. As a baby her tiny body resembled a bag of brown sugar. Arms and legs flopped around causing Polly to look more like a seasoned lily, petals loose and close to falling off, when she really should have resembled a new bud. Terry Brazelton and his book Touchpoints, given to me at the birth of my first child thirteen years ago, pointed out that Polly was way behind other babies. She could not hold her head up for months.

Neither could I.

My weakness as a mother to a child with special needs mirrored Polly's physical weakness as an infant. Her diagnosis of Down syndrome picked up my world and threw it against a brick wall. I stayed drippy and unglued for about a year after her birth. My heart weakened as I worried about what the presence of an extra chromosome would mean for Polly. I worried about the future.

But with time, thank God, we both strengthened. Polly and I have grown important muscles over the years. Her: muscles to stand, run, jump, and climb a knotted rope ladder. And me: muscles to love without fear, trust God, advocate for my daughters, and probably most important, enjoy them without barriers.

Polly's strength of body and character astound me. She pushes herself to acquire new skills. She makes friends with anyone who comes into her path. She cracks one-liners, causing our family to burst our britches with laughter, and she teaches me about what is worth paying attention to and working for in this fast-paced, often difficult, life.

Here at the park Polly climbs and plays. I notice. I'm thankful. Struggles recede into the background of my life at moments like this. But they don't recede completely because I understand that without them I probably wouldn't stop long enough to realize the magic in front of me.

Knowing all four of my girls are safe, I close my eyes. The sun baths my face in warmth. A breeze sweeps up the hairs on my forearms. I whisper a prayer of thanks for strength and weakness because you never really understand or appreciate one without the other. There have been hard times, and there will be more, but I hope to follow Polly's worthy lessons. Go forward even when you are certain you cannot. Work until you are sure-footed where God has placed you. Chase after whatever he puts just ahead of you. Ponder weakness and strength and how they mesh together to create something new in you.

I watch Polly tag a child at the top of the play structure and listen to Evangeline cackle as her dad swings her higher. My eyes close once again. I breathe deep.

"Here," God whispers from above.


Gillian Marchenko is the author of Sun Shine Down. She lives in Chicago with her husband and four girls. Join me on my Facebook Author Page to enter to win a copy of Sun Shine Down. For more Perfectly Human posts, click here. For an explanation of this series, click here.

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