We drove along the snow-covered road happily singing the last three verses from the musical The Sound of Music:
“That will bring us back to doe, doe, doe, doe - a deer,
a female deer”.
For some reason she’d scream out only the “doe, doe, doe” portion with an intensity that would send slobber flying and laughter ringing in my little Volkswagen. I’d laugh with her as we headed down the dark road towards home, enjoying the bliss that she’d found in mimicking my words.
Then, as quickly as it started, the laughter stopped. She took her ever-present, deflated ball and began to tap it against her mouth in a quiet, rhythmic cadence that signaled an introspective moment. I’ve learned to take advantage of those sudden shifts in mood, to use them for what I call “free-floating”. It’s a chance for me to let my guard down and think about my own world with all the selfishness I care to muster. We drove along for a number of miles, with me silently marveling at how grown-up she seemed, sitting there in the front seat. I’d taken to having her sit in the front seat because it was easier to visually manage her there. When she’d drop her assortment of comfort toys, I could simply reach down for them rather than rummage with one hand behind the seat while trying to drive.
Quick as a rattlesnake, her left hand swings at my right arm – spinning the steering wheel a quarter turn to the left, sending me directly over the centerline. In my over reaction, the car slid a bit on the ice but quickly regained its proper location on the road. I instinctively yelled “NO!” to her and was rewarded with a deep, cynical laugh. She immediately reached out to do it again but this time I allowed her contact to flex my arm – the car holding fast in the right lane. I drove on using only my left arm, holding my right arm in reserve to fiend off her next attempt. There was no place to safely stop on this road and move her to the back seat so I drove on; that beautiful earlier interlude of singing having been replaced with a panicky and very confrontational mood.
I was angry with her now. Angry about the destroyed beauty of the moment, angry for the hazard she’d put us into, angry about the insistent attempt at doing it again. No doubt she’d find catching a face full of airbag as thrilling as a new type of extreme sport, I on the other hand, had no desire for it or it’s implications. For the last 5 miles, I drove defensively – holding her hand as best I could, ignoring the sharp fingernails as they dug deep into the back of my hand as she tried to wrestle free.
One stop before going home, I decided to shut the car off and put her into the back seat. Usually, once there she kicks the back of the driver seat or tries to rip the headliner out so I left her in the front seat while I went in the store. Now I know that German engineering is no match for Korean occupancy as while I was in the store she ripped out more of the heat vents in the dash. I noticed that in addition to the vent modifications, she was much more calm. I took this as a gift from God – yes, five minutes of relative calm is a gift from God. What I could not have seen in the dark car is that while I was in the store, on that brief 90 second span of time her eyes had rolled to the back of her head and the calm, serene attitude was actually another seizure.
She was lethargic getting out of the car but I simply assumed she was being difficult again. I was still mad at her and in my mind, more concerned with the autistic boy that lives down the street and around the corner – the one who in the summer months, spins endlessly in the garage with the lawn sprinkler spraying (in the garage), often times he spins naked – not a care in the world. I thought I’d seen him standing in the dark by the road, spinning. While managing Bethany, I’d turned around and driven back but didn’t find him although I thought I’d seen his shadow along the gate – I was worried for his safety but could manage no more than concern. My thoughts were on him in our driveway, not on the slow moving and unresponsive daughter that had just made me so angry.
As I hung my coat, I heard my wife’s first comment on seeing Bethany; “oh, we have rolled eyes again, great…”
The rest of the night was an enigmatic blur to me. Her self-abuse, the blood from a split lip, the time Sherry sat with her holding her hands and rubbing her temples so that she’d not try to dig her eye out with her fingertip. It was all a faint blur as I fell into a deep, depressed sleep - held captive in my sorrow while my wife again carried the burden of intervention.
“Doe, a deer, a female dear. Ray, a drop of golden sun. Me, my name, I call myself. Fa, a long, long way to run.”
Tonight we’ll sing the song again, she’ll laugh with all the gusto she can muster, and the cycle will likely happen again. We dream of a simple EEG, of a 90 minute visit to a neurologist and a diagnostic interpretation coupled with an action plan. It appears thought that the Lord will only supply is with a simple song that we can sing over and over, its words washing over us in a beautiful array of images.
I guess that “Ray, a drop of golden sun” is the best we'll get and perhaps it's His way of saying “My grace is sufficient for you”.