Sunday, July 19, 2015

the gift of light

I couldn't wait to be a mom. I didn't, actually - not for long anyway. Married as a sophomore at age 20, I stopped taking birth control the day I graduated from college. And there wasn't a doubt in my mind, as I beamed in my gold Summa Cum Laude honor cord, that we'd take highest honors in parenting, as well. I could see it all.

I wanted a Bible name and my husband wanted a Sci-Fi name.When Luke rose to the top of the list, I balked at first. Really? I'm a Star Wars fan, too, but "Luke, I am your father"?  Yet, I couldn't deny absolutely loving it.   When we looked it up, we discovered that Luke means "Light Giving". Wow... Light-giving. I liked that. A gospel name. A Star Wars name. Luke, it was! 

All parents think their children are beautiful, but this boy - complete strangers stopped to comment on his eyelashes, his cheeks, his perfect mouth. We were undone from the start. Perfection.

It's interesting how you can know something and not know it at the same time. I observe this in other parents, now, as a kindergarten teacher; each time, I'm both frustrated and moved with compassion. By the time Luke was 2 years old, I knew he had some form of autism, though I didn't admit this to myself or anyone else. The most obvious, pressing concern at that time was how he made no attempts at verbal language. Literally. No "ma-ma", "da-da", nothing. So, a speech therapist began visiting our home once a week to work with him - actually, to teach me how to work with him. The A-word never came up - neither of us ever even hinted.

My first verbal communication with Luke is as fresh in my memory as the day it happened.  I sat near him while he arranged his Little People sets: the farm, the zoo, all of them in a diorama across the basement floor. I picked up the dog and started playing with it. When he reached for it, I - like so  many times before - gently but insistently prompted him to verbalize his request. This time, he did! He didn't say, "Can I have the dog please?" or even "dog", for that matter. He barked. It's funny now, I know, but he barked! And not with a lame "bow wow" or "woof woof" - he literally made a sound that if your eyes were closed you would swear had come from a dog. I celebrated as I returned the toy dog, and he laughed, tickled that I'd understood him. Then it became a game. I took the cow - he lowed like a pro. We had the best time together, there on our tummies on the floor.

I also remember learning to better comprehend his nonverbal language. A consignment store in town had a small area for children to occupy themselves as their parents shopped. He'd loved it before, so we returned - only this time, he was distraught. He grew more and more frustrated, clearly upset about something specific. He was holding his hands out in front of him, opening and closing his fists, begging me to understand. Finally, it clicked: BLUE'S CLUES! Of course! Then I remembered that the only other time we'd been there, Blue's Clues had been playing on the television. I honestly don't remember how the scene played out, after that - we were both just excited that I "got it". He wasn't throwing a fit, he didn't need to be punished - he needed to be seen and heard and understood.

So, yeah ... I wasn't stupid. Other parents of going-on-three-year-olds weren't squeeling with glee when their children made animal sounds or hand signals. And there was more: lining up, spinning, flapping, ear-covering... I knew. I knew before the doctor pulled that extra questionnaire from the file drawer and began using it, rather than the more general child development questionnaire. I knew, before she started marking my answers to questions like, "Does the child whirl himself like a top? Always, Often, Sometimes, or Never...". I understood, even though she didn't say out loud, "I'm using the CARS, now, because the minute your 3 year old son walked into my office he arranged the magnetic letters into perfect alphabetical order, and has since found 100 different ways to twirl the shiny metal chain that used to attach a (probably quite expensive) fountain pen to my desk ... and he hasn't once looked me in the eye." Before we'd even walked into her office, I knew. Yet, I didn't know. I couldn't know.

I couldn't see.
I was blind.

But we loved him - dear God, if anything else was true, how we loved him! And he loved  us. And that love overcame. Until, eventually - ultimately - he lived into his name: Light Giver. He lit up the dark. He gave us sight. He is, still.

Eventually I came to do far more than accept "the A-word". I began to see the beauty in things that previously broke my heart... like the night I heard sounds coming from downstairs in the wee hours of the morning. I found him there in the dark, alone, lining up his alphabet cards while singing "Chicka Chicka Boom Boom" to himself (with perfect pitch, I should add). I wanted to cry, and probably did, but something new was there as well. A realization. An appreciation.

I could see.

I was witnessing a positively beautiful moment.


And so, last week, as I stood in front of the main stage at the Wild Goose Festival listening to Gungor - a group whose music has been impacting me for years - I was struck dumb when I heard them explain their new song, Light. They hadn't learned that their daughter, Lucette, had Downs Syndrome until she was born. They told the story.

now 16 year old Luke
Lucette, they explained, means Light.

Yes. Yes, I know it does....

I sat on the grass and wept along with Michael and Lisa, as they sang us their daughter's beautiful song. Grateful.

For Luke.
For Lucie.
For Light.

*from Gungor: "Lucie has taught us how much every life matters. This song is for her and all the beautiful people on this planet with special needs. We think that you make this world a better place."

1 comment:

  1. from a friend: My first Sunday at HTLC, your whole family was there and I was in my position with the choir. When the time cam to say the Lord's Prayer, Luke was the closest member there and I reached out and took his hand, not really knowing him or anything about his story. What I felt when I touched him was a remarkable wave of peace that he gives off. I know, touchy-feely vibrations talk may put some people off, but at that moment I knew everything I needed to know about Luke. It is a great gift that he can reveal himself with touch, and that was a remarkable moment for me.

    It made such an impression on me that when I talked to Bethan that afternoon I discussed it with her at length. I haven't mentioned that moment to anybody since.

    Your blog post reminded me. I'd been meaning to mention it to you, but it was a sublime moment in my life.