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Lessons Learned in the Twilight With My Granddaughter With Down Syndrome

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It’s 8:30 and she’s yawning, but fights it. Juliette sits between Colleen and me on the couch. We’re watching some new Disney movie I don’t recognize. But she knows it by heart. We’re snuggled under a blanket and she’s quoting the lines in bits and pieces; a word here, a sentence there. When the scary part comes, she dispatches me to the flat screen to hide the ghost. I start making magician moves with my arms. She bounds up and joins me, cheering when the ghost dissipates and the class of would-be wizards in the story cheer.

She runs back into Grammy’s arms. “I did it!” she shouts as clearly and as perfectly as if the Down syndrome that slows the muscle development of her tongue doesn’t even exist. Colleen loves these moments. Jules can be parsimonious with her hugs. That’s a 5-year-old thing. My wife closes her eyes and, for a moment, knows what heaven must be like.

I sweep our granddaughter into my arms and announce it’s time for “rocky rock,” the code word for rocking her to sleep. Juliette usually fights this. But not tonight.

“Daddy? Mommy?” she asks.

“They are visiting Aunt Shel Shel and Uncle Casey,” I say. “But they will be home soon.”

Jules accepts this and I carry her into her bedroom. There’s an overstuffed white rocking chair next to the bed, the stage for many a bedtime story.

When I sit, she curls against my left shoulder. Her little body fits perfectly in my lap. Jules is growing like a weed and I’m aware that this is a moment to be savored. She wraps her arms around my neck for a minute before letting them fall on top of mine. Her head rests on my chest as she murmurs, “Daddy, Mommy, Hudson, Grammy.”

Juliette distills the language to its bare essence, using just enough words to get her point across. I think about the people I know (and I’m one of them) who require paragraphs to express thoughts that she can communicate in a couple of syllables.

I turn on the radio voice I used to use on the overnight shift, when listeners expected a mellowing influence between the tunes — a verbal message that is at once calming and reassuring. “I love you, baby. Daddy loves you. Mommy loves you. Hudson loves you. Grammy loves you. We had a good day today and you’ll have a good day tomorrow.”

Some nights, Juliette is full of ideas and getting her to sleep is a chore. Not tonight. I repeat the mantra once more, slower this time, dropping to a whisper at the end.

I can feel her body relax. Her breathing synchronizes with my own. The small palm of her hand makes circles on the top of my thumb. Each circle is slower than the last, until her hand softly grasps mine and the silence of the night surrounds us.

Colleen comes in to lift her from my arms. Juliette melts into her embrace. Grammy gently deposits her into the familiar softness of her bed.

My wife and I hold hands and look at this small miracle the Universe has given us. We don’t speak, but I know we are both pondering a hundred different memories of moments like these with Shelby and Brandon, a time when Jules’ older brother let us snuggle him before bed, and how lucky we feel to have been blessed with a partnership that helped create this magical spirit.

When you cross a certain threshold of age, you begin to wonder if your contributions to the world are nearing an end. Our culture doesn’t celebrate the elderly. Traditional employment shuns you for younger, more diverse faces. We feel ourselves begin to lose a grip on our powers and think more often about people our age who have left the planet, and how quickly they fade from memory. It doesn’t take long before human beings we used to know become nothing more than names on a family tree at

We decide that being isn’t about the past or the future, but about making the most of what tools remain to live in the now. Letting go of past pain. Learning not to worry about tomorrow. We spend a lifetime struggling to do these things.

How ironic that it’s a lesson that only becomes clear in the twilight.

Originally published: May 1, 2021
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