Traditions make memories, especially when you are blessed with a child who has disabilities.
I tell Alexa to play the song when it’s time for me to go. Jules knows exactly what’s happening and puts her arms out in that wonderful “pick me up, Grandpa” pose. The music starts and we spin around the living room while I whisper the words in her ear.
She loves it when I “dip” her. She always laughs when I turn her upside down and has come to recognize the parts where she should “hold me tight.” I love that!
It’s one of those magical grandfather/granddaughter experiences I hope she will remember long after I’m gone. Although she can sign way above her age group, her words are still few. But she punctuates the lyrics with her huge smile, saying “me!” every time Michael comes around to that phrase.
It definitely touches my heart. I often find myself shedding tears of gratitude that we were given a child who has Down syndrome and live close enough were my wife and I can be part of her and her brother’s lives.
Juliette exudes love and authenticity. Long ago, she figured out that she’s a girly girl, emulating the things her mom does to “get pretty” in the morning and mimicking her actions and expressions. And yet, Jules still keeps her 8-year-old brother at bay and jumps into our laps whenever we sit down, as if to say, “Come on, people! There is way too much life to live here. Let’s go play!”
That includes dancing.
I’m teaching her cha-cha moves for the instrumental bridge in “Save the Last Dance For Me,” and one of her growing vocabulary phrases is “cha-cha-cha.” We consider those three connected syllables a victory, since most of her conversation doesn’t get past two.
We are both laughing by the time the last verse comes around and, like many a 3-year-old, she will repeat “cha-cha-cha” again and again after the song concludes.
Repetition makes habits and Jules knows when she wants to make one stick.
Dancing is definitely a passion. But at her age, her attention span doesn’t always make it to the end of the song.
Tonight, she was signing “food” when the band went into cha-cha mode.
As she put her index finger to her chin again and again, saying “crackers,” the universal term for sustenance in her world, I realized again that she’s not always into these special moments as much as I am.
Love exists on Maslow’s “Hierarchy of Needs.” But when you are 3, it’s a much lower priority when you are hungry.
We spun our way toward the microwave and she was soon happily munching away on her favorite entrée: chicken nuggets.
As I drove off toward the Florida sunset, I turned Michael’s song up loud on the car radio, savoring my encounter with this extraordinary soul, on loan to us from God. I was reminded again that miracles happen every day. Too many of us are so caught up in chasing our goals that it’s easy to miss them.
One of the greatest lessons Juliette has taught us is to make the most of every tender moment.
If she were older, I imagine Jules would say, “Live in the now, Grandpa. It’s a gift. That’s why we call it ‘the present.'”