Special Needs Memoir: Sun Shine Down
Gillian Marchenko, author of the recently published memoir Sun Shine Down and former Different Dream guest blogger, is with us today. She writes about her new book, about where she and Polly are today, and about the importance of noticing growth …
On Growth
It’s a sunny Sunday afternoon. My youngest daughter Evangeline (adopted from Ukraine in 2009, and who has Down syndrome and Autism) swings in the adaptive swing while her Papa dutifully pushes her back and forth. 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 happens to have 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 is momentarily preoccupied.
“Polly, where are you?” I call.
“Over here, Mom. I’m here.”
“Where?”
I turn around where I stand. I don’t see her.
“Here.”
Her voice calls from above. The knotted rope ladder to my right shakes and I catch sight of my daughter’s blue and green Velcro tennis shoes commanding 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
Her diagnosis of Down syndrome picked up my world and threw it against a brick wall. In my memoir, Sun Shine Down (published with T. S. Poetry Press in August), I talk about how, for about a year, I stayed drippy, unglued, apart, so very sad about the presence of an extra chromosome in my child, and so very, very frightened of the future.
I was as weak as a mom as Polly was as a new baby. Her infant body resembled a bag of brown sugar. For months, her arms and legs flopped around. She was unable to hold her head up for a long time.
As was I.
But Polly and I both have grown important muscles over the last seven years. Her: muscles to stand, and then run, and jump, and climb a knotted rope ladder. And me: muscles to love without fear, to trust God, to advocate for my daughter, and beyond all else, enjoy the crap out of her.
Polly’s growth astounds me. She works hard to acquire new skills. She makes friends with anyone who comes into her sight. She cracks one-liners, causing our whole family to burst our britches with laughter, and she continues to teach me about what is really worth paying attention to in life.
I am blessed to be Polly’s mother. There have been hard times, and there will be more, but I plan to follow the footsteps of my daughter. To take a step when it is difficult, to work until I am sure-footed and able to chase after whatever God puts in front of me, and to make sure there is enough time in my days to appreciate growth in my family and in myself.
Have You Read Sun Shine Down?
Have you read Gillian’s new book? What did you think of it? Leave a comment below.
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By Gillian Marchenko
Gillian Marchenko is an author and national speaker who lives in Chicago with her husband Sergei and four daughters. She writes and speaks about parenting kids with Down syndrome, faith, depression, imperfection, and adoption. Her work has appeared in numerous publications, including Chicago Parent, Thriving Family, Gifted for Leadership, Literary Mama, Today’s Christian Woman, MomSense Magazine, Charlottesville Family, EFCA Today, and the Tri-City Record.
Gillian says the world is full of people who seem to have it all together. She speaks for the rest of us.
Connect with Gillian on her website www.gillianmarchenko.com, on Facebook, and Twitter.
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