safe
In our house, we have learned to keep time this way, in days since the last seizure, but this is not something we carry along, not at all like some battered suitcase stuffed with all our worries and dragged along behind, but rather something acknowledged and touched by our hands and burned in the pasture, the edges bending, the ashes drifting toward the stars, as we make a sacrifice of thanksgiving.
We are but sheep, see, camping under the watchful care of a good Shepherd.
On night two, Riley feels comfortable again in her body.
This is how I know: Tonight, when I put her pills in her hand and give her a glass of water, she laughs and ever-so-slowly, like slow motion slow, begins to lift them, pill-by-pill, to her mouth. She giggles and her cheeks pink as she makes a joke of it, but behind her crinkly eyes, I see the defiant shade of a young woman bound to go her own way. That first night, she’d been so battered-up tired she’d only nodded and knocked the pills back without a single comment. So as recoveries go, this one certainly hasn’t been the longest.
In the journal I keep open on my desk, I make a note, a written record of grace resting in the curves and loops of cursive letters. I smile, trying just to be glad she’s recovered her strength so quickly, because when she’s well, it’s harder to keep her close.
After Riley takes the pills, I make a big show of escorting her up to bed. I stand at the bottom of the stairs and wave my arm, like a ride operator encouraging fairgoers to step right up.
“Okkaaay, Miss Riley, you know what time it is,” I call, grinning way too large, wondering what the exit strategy should be for putting my young Autistic adult to bed at night.
Riley can do many things on her own, and in fact, we feel astounded when we begin to remember all that God has done in her life, how He has made her talented and capable and diligent. She’s so much more independent now than she used to be, and her life is moving on, but when it comes to rest, she can still be extremely self-destructive. Of course, we recognize this as a human weakness more than an Autistic one, because who do we know who doesn’t tend to self-destruct if left to their own devices?
Riley reaches into the air above her head with both arms, feigning an enormous stretch, which those closest to her know to interpret as nonverbal for I don’t want to.
I have stalling tactics too, so I get it. It feels less rebellious somehow just to take my time getting around to obedience, nevermind that scripture almost always describes the faithful as those who respond with purposeful immediacy. Abraham left “early the next morning” to sacrifice his son; Jesus, after praying gut-wrenching prayers for deliverance, quickly went to meet his betrayer.
I deliberately ignore the stretch and keep swinging my arm in a wide arc toward the stairs. “Come on, Riley-girl, you’ve got this,” I say, with practiced joviality. “It’s time to go to bed.”
She giggles again, flopping back against the sofa, but I see that lurk of shadow as she groans and hoists her body up. She moves not toward me but away, circling around through the kitchen to take her phone from the charger, and then moving over to her desk to run a finger down the page slowly, starting at the top edge and sliding down until her finger rests on today.
Sometimes, we go the long way all on our own.
“Okkaay, let’s see,” she says.
“That’s not the way to bed,” I say carefully, still smiling, but watchful that she’s gotten off course.
Repeatedly, Kevin and I have tried giving Riley the freedom to choose her own bedtime and have discovered that she likes to spend hours upon hours of unsupervised time at night indulging her obsessive compulsions. Into the thin hours, she repeats self-narrated checking and straightening drills, pushing the paper towel holder up against the backsplash in the kitchen and moving the trashcan back until it hits (and scrapes) the wall. She pushes on the backs of the chairs at the table, even though the chairs already sit where they need to sit, and she straightens the pillows on the sofa ten times, pulling the corners up into careful points. And in the midst of all this, she obsessively clears the notifications on her phone and snacks on junk food, jamming crackers into her mouth with the flat of her hand. She would literally gamble away her life on worthlessness. But this is Riley’s cliffside path, and to her, it’s free and beautiful.
From time to time, Kevin and I have interrupted Riley’s late-night rituals. She blinks like a wide-eyed doe when we say, “Why in the world are you still up?” And when we ask her what she’s been doing, she always says, “I have no idea.” I’m not really sure that’s a lie.
She blinks at me now, her finger still pressed so hard into Tuesday it’s gone white.
“Come on now,” I say, pulling out my ride operator grin again, “you can do all that tomorrow.”
She sighs and turns to me, her grin tight, and mounts the stairs with even more burdensome sighs. She wants to say something, I can see that in her eyes, but it is day two, and she still remembers our speeches about this rest problem making her vulnerable to seizures.
Ever so slowly, Riley climbs the stairs ahead of me, and ever so slowly, she shuffles down the hall, and I walk behind her considering how slow feels so much easier for us when it’s avoidance.
“Get your teeth brushed and then I’ll tuck you in,” I say, turning toward my room to conduct my own ablutions.
Riley doesn’t turn, but acknowledges this with a reluctant, “mmhmm,” before shutting herself into the bathroom.
Periodically, I peer down the hall, glancing at the rectangle of light underneath her bathroom door, listening for sounds. As an epilepsy mom, I am always listening. Too much silence can mean a seizure in progress, and any kind of crash or thump or bumble can mean a seizure has made her fall.
Finally, hearing nothing at all from the safety of my own doorway, I stand in the hallway outside the bathroom door and listen harder a moment before opening the door at last to lay eyes on her.
I turn the knob, which feels cold in my hand, thinking that as closely as I keep track of Riley, God keeps even better track of me. In Psalm 139, David wrote of God, “You know when I sit down and when I stand up; You even know what I’m thinking at a distance.”
In the bathroom, Riley stands poised with a plastic straw in her hand, preparing to plunge it into a square of thin foil on the top of a boxed chocolate milk. She freezes as I open the door, looking toward me as I walk into the room. The clear plastic sleeve that held the straw for her chocolate milk drifts off the countertop toward the floor, and she leans over to pick it up.
“What are you doing?” I say incredulously. “You don’t have time for chocolate milk right now. It’s time to brush your teeth!”
Carefully, she places the tiny plastic straw beside the milk box, before turning again to address me.
“I don’t like going to bed early,” she says simply, finally, the words lightly laced with annoyance, for this is the thing I know she has been wanting to say since I put her pills into her hand.
“Honey, it’s not early. Trust me; you’re right on time!”
Oh, the things we think we know from our limited, broken perspectives, that’s what I’m thinking, because I know on how many occasions I’ve argued about time with the one who Shepherds me, and that’s what I’m doing now, shepherding my daughter to safety.
“Listen, if you don’t get your rest, you will have seizures,” I tell her again, as succinctly as I can manage. “So, I’m sorry you don’t want to go to bed right now, but I must insist. I can’t trust you to go at a healthy hour if I leave you to it.”
I pick up the chocolate milk and the straw, the dirty clothes still on the floor from her shower, and a giant, now empty, coffee mug she must have been using this afternoon.
“I’ve got these things. You brush your teeth.”
I know Riley doesn’t understand the danger she faces on those nights when she blithely takes her cliffside road, and I know what she can’t yet see, so it doesn’t bother me at all that she finds my safeguarding intrusive and annoying. Compassion and love move me to intervene, even though she can’t understand why I need to. Sometimes I wonder if one day God will open my eyes to how He saved me when I had no idea what I’d nearly stepped into.
I stand in the hallway, leaning against the door jamb, listening to the sound of water tumbling into the sink and the tap of Riley’s toothbrush against the side when, warmed by the sacrificial fire, I give thanks again, acknowledging the protectiveness of my own good Shepherd.
“You never leave me,” I whisper, and worship wafts, like a curl of smoke. “You always keep watch, even when I don’t know I need it.”
Riley opens the bathroom door and, as she finds me still there, I see a question changing the color of her eyes. “Where do I have to go to get away from you?”
I think David felt similarly uncomfortable over the all-knowing presence of God, when, sounding somewhat blown away, he wrote in that same Psalm 139, “Where can I go from your Spirit?”
It takes a while, sometimes a whole lot of cliffside road, sometimes our toes curling right over the precipice, before we figure out we’re no good on our own. And all that time, God stays right with us.
After an intentionally slow show of putting away her jewelry, Riley finally acquiesces and slides into bed. I sit beside her, and, after smoothing the hair away from her eyes and receiving another tight, if only slightly warmer, smile, I begin to pray.
“Father, help Riley with her seizures, please.”
And Riley, trembling a little beneath my guarding hands, begins to laugh, with relief.
