July 26 is National Disability Independence Day which commemorates the signing of the Americans with Disability Act (A.D.A.) in 1990. In honor of this, we asked staff member Chris Cook to share something he wrote a few months back about his 12-year-old daughter, Julia, who has Down syndrome. This thoughtful reflection about her worshipping during a Good Friday service was originally shared on his personal website: jchriscook.com.
We went to our church’s Good Friday service this evening. Normally, Julia prefers to hang with the kids; but it wasn’t an option today and we went into the service as a family.
This used to be one of Julia‘s favorite things. I remember a time when she would be right down front during the pre-service band rehearsal, dancing with complete abandon in the thick of the subwoofers. But since we returned to in-person worship after the Covid lockdown, she’s a lot more sensitive to loud, abrupt sounds. A lot of the time, she won’t even walk into an auditorium without putting on her noise-canceling headphones.
So we settled in at the back row of the center section, right on the aisle so we had options if something went sideways and we had to bail. Soon the lights changed and a low chord reverberated through the crowd as people shared a couple of readings. I could feel Julia tense up and anxiously look around the room. She made a hurried request to go to the bathroom – just to avoid the intensity of the sound.
I couldn’t help thinking that this could be a long service…
She and Jocelyn soon returned from the bathroom and her fidgeting started again. But then the music started – a slow, somber tune in keeping with the solemnity of Good Friday – and Julia leaned over to me and whispered one request: “Dance.”
This wasn’t totally unexpected. It seems like just about any time there’s music – live music especially – this girl needs to move. I often wonder if it’s her way of claiming a little bit of control over the situation; it’s usually the more upbeat stuff that she responds to.
We got out of our seats and shifted to a space behind our section in a pool of light just to the left of the sound booth. It was in view of the rear sections of seating, but hopefully not too obtrusive.
And she started to move.
But it wasn’t the usual “stomp and turn” with an occasional twirl that Julia is known for. It was slower, more rhythmic – in keeping with the feel of the music. Then, as the energy of the song grew, she stood feet apart, reaching up to the light that bathed her.
It was extraordinary.
The song ended and we went back to our seats; I couldn’t help but wonder what was really going on there. I kind of wanted to see it again, if I’m honest.
Then came another song for Communion. On an impulse, I had Julia participate in the elements with us. She had been worshiping in a way that made sense to her – unconventional as it was – so it was fitting that she participate in the rest of the service as she was able.
After we took the wafer and tiny cup of juice, I hesitated about where we should go because Julia wanted to dance again. We ended up further back, out of the flow of people stepping up for the communion elements. Then my friend Jen came up and shared something with me that I don’t think I’ll ever forget:
Jen had been sitting with her husband behind the sound booth and saw the whole interaction between Julia and her God in that little pool of light. Jocelyn and I had been a little worried that in that somber, quiet moment that Julia’s dancing might have been a distraction. Jen assured us that our misgivings were unfounded.
This wasn’t the first compliment we’ve received about Julia’s dancing during a worship service. For as long as I can remember, her exuberance is fed by the energy of the music and has often drawn compliments from strangers who love watching her.
Tonight was different – and it was confirmed by a woman whose discernment I trust. Julia’s interaction was quieter, more sensitive. It felt like in that moment, I was watching Julia’s friendship with Jesus deepen into something more than just having fun dancing. I saw her connect with the Infinite in a new way I’ve never seen.
And I came to understand that, in ways quite alien to my own, perhaps Julia had more clarity about the love of God than this clueless Dad gave her credit for.
That hope was magnified in the words of an old song I remembered from over twenty five years ago:
In open fields of wild flowers
She breathes the air and flies away
She thanks her Jesus for the daisies
And the roses in no simple language
Someday she’ll understand
The meaning of it all
He’s more than the laughter
Or the stars in the heaven
As close as a heartbeat
Or song on her lips
Someday she’ll trust Him
And learn how to see Him
Someday He’ll call her
And she will come running
She fall in His arms
The tears will fall down
And she’ll pray
I want to fall in love with you
I want to fall in love with you
I want to fall in love with you
I want to fall in love with you
Love Song for a Savior © Capitol Christian Music Group, Capitol CMG PublishingSongwriters: Charlie Lowell / Dan Haseltine / Matthew Ryan Bronleewe / Stephen Daniel Mason
I found and played that song as we were putting Julia to bed; warm tears flowed at the prospect of her knowing Love as surely as anyone else – in a way that she can uniquely understand – from an infinitely resourceful Love that pursues us all. That she could trust and run toward Him in utter familiarity and safety, falling into strong arms warmly receiving and welcoming her.
Far from a distraction, Julia, as she danced in that pool of light, was a way-pointer to a Love that beckons us all. And I’m waking up to the humbling prospect that she may understand it far better than any of us.
