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The Gift of Loving Polly: Parenting a Special Needs Child

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We went back to Michigan to celebrate Thanksgiving with my family, and then it seemed like I blinked and we were decorating for our first Christmas in Chicago. Our two-story house with slanted, old wooden floors and tall ceilings was ready for the holidays.

One day, a couple weeks before Christmas, Polly and I were spending a lazy morning at home while the girls were at school and Sergei was working next door in his office. There wasn’t a therapy session scheduled. It was noteworthy—a day without the awkward existence of therapists in our home, singing out commands, and urging Polly to put multi-colored blocks in a bucket with the promise of bubbles. Polly still wasn’t walking, but she was able to crawl around the house and pull herself up on the couch to cruise. She wasn’t talking yet either, but she had a way of making her needs known through grunting, pointing and sign language.

The Christmas tree stood in the living room, in the middle of the large window. I love Christmas trees. As a little girl I’d lie under the tree for hours, staring at the inside sparkle of the lights—shiny, bright, blurred from my intense gaze.

I had turned on the white lights as soon as I’d woken up this particular morning. Our tree was like a patchwork quilt: a handful of wicker angels and reindeer; yellowed, unmatched ornaments purchased from thrift stores; trinkets the kids made at school; and cream and gold bulbs, all pulled together with a velvet red tree skirt that didn’t quite lay flat. Christmas lights were strategically tacked around doorframes in our living room. A cheerful ceramic winter village was fashioned on the bookshelf. The twinkling living room lifted my spirits on that dark, winter morning.

Polly was happy. She had a full belly and a fresh diaper. Dressed in lavender pajamas, and wearing her tiny pink glasses, she crawled up on the couch and lured me into playing with her. I didn’t feel like playing. There were many other things I should have been doing, like washing dishes and vacuuming. The beds upstairs weren’t made and there was a load of laundry that needed switching in the basement. And deep down I was frustrated with myself for feeling sorry, once again, that Polly had Down syndrome.

But Polly kept putting herself right in front of me, smiling. I reached out and tickled her belly. Her little body erupted into a boisterous laugh. She sounded like a forty year old who had been told a dirty joke. This chuckle was new and made her entire body jiggle. In spite of myself, I started to laugh too, which made her laugh even harder.

Our laughter escalated into a mild hysteria.

My shoulders relaxed. I hadn’t even been aware they were tense. The pressure I’d grown accustomed to since Polly’s birth, at times lessened by bits of joy and comfort, was gone. What was this new light?

Polly started to babble and I joined in. We formed a secret language on the couch near the Christmas tree. I was her sympathetic friend, listening to her unload her feelings. She’d coo, “Ah,” like, “I’m feeling good today,” and I would answer, “Ah?” Like, “I’m glad to hear that.” Then she’d get honest. “Ah,” which I know sounds similar to what she said before, but she was actually saying that her week wasn’t going well, she hadn’t been able to poop, and she was sick to death of tummy time. She didn’t have the desire to work on her core strength. It was too much work. To that, my “Ah” affirmed that her life was difficult.

Not wanting the connection with my daughter to end, I flipped on some music and scooped Polly up. We swayed and watched the lights flicker. Our living room became an underwater universe and Polly was sharing her oxygen mask with me. I breathed her in for the first time, without feelings of fear or regret.

I held her close without any barriers and closed my eyes. Her unconditional love warmed me deeply as she forgave me with little chubby hand pats on my back. Behind her sat our Christmas tree full of gleaming lights and trinkets and ornaments. At the tip of that tree was a golden star.

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Gillian Marchenko is the author of Sun Shine Down, (T. S. Poetry Press), a national speaker, and an advocate for individuals with special needs. She blogs about imperfect faith and parenting children with Down syndrome at gillianmarchenko.com, and lives in Chicago with her husband Sergei and their four daughters.

Image by Susan Etole. Used with permission. Sourced via Flickr.

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