Saturday night, and the descent happens just this quickly:
We sit around the table licking frosting from our fingers, when she finally lifts her cupcake in one flattened palm, admiring the shape of it from all sides. She has her own way—her own “technique,” she says—for savoring food. When it comes to cupcakes, she tastes the frosting first, licking it like icecream on a cone.
“Mmmm, this is so good,” she says, and I offer her a smile, and Mom and I continue our conversation. I don’t even remember now what we spoke about. Some details have a way of erasing others. Kevin sits in the chair at the end of the table, talking to us and periodically also to Riley as she licks sweet sugar from her lips.
Then he says her name, and it’s the tone that breaks my smiling glance at my mom, the urgent sharpness that chokes our laughter.
“Riley. Riley, look at me.”
“She’s seizing,” I say, somewhat inwardly appalled at how calmly the words come out. Just the facts, not the way they make me ache.
“Riley. Riley,” Kevin calls to her as we would a child who has a wandered out of view, urging her to return. “Come back to us, Riley.”
She still holds the cupcake in her hand, and I can see that she’s trying to respond, twisting her head toward him while her eyes lock and her pupils expand. I think of her in the ocean, drifting out of reach, and Kevin and me calling her back, waving our arms. “Riley, it’s too far. Come back toward us,” and the further she drifts, the harder our words fall, the more we clip the syllables, abandoning our position to swim toward her. I watch helplessly as she drifts away, wishing I could dive right into those expanding pupils and wrap clinging hands around her wrists and pull her back to safety.
“What?” Mom says to me, but she already knows. She’s watching too. The question is only another expression of oh, not this.
We never get used to watching her seize.
“She’s having a seizure,” I say again, dumbly, getting up out of my chair to sit at her other side. I touch her hair, her cheek. “Riley, hey,” I say, gripping her chin, turning her face toward me. It’s seconds, but it feels like minutes, and the cupcake still sits in her open hand, waiting.
“Hmm?” She always returns first with sounds, sounds replacing words, turning her head before her eyes follow. She blinks, as though waking from a dream, and makes herself smile to reassure me.
“Riley, are you back? Are you with me?”
“Yes, I’m with you, Mom.” She nods just slightly and that sweet tone returns. She notices the cupcake in her hand and turns it, considering. She will return to licking up the frosting, to savoring the richness of the butter, the spice of the cinnamon. She will continue as though nothing happened at all, because for her, it is only a missing moment, a stutter in the rhythm of an evening. But we will not return to our laughter and conversation. We will sit looking at each other, studying her face to be sure, stumbling over own helplessness. We will utter silent prayers beginning with Please. Oh, please. We will finally get up from the table and clear the last of the dirty dishes and the wadded napkins, trying hard to remember what light thing had consummed our attention before this. It’s impossible for us just to continue.
In the kitchen, after Riley leaves her dishes and we reluctantly watch her turn and walk out of the room; after we lay our chilled hands against her warm skin and pretend nonchalance, Mom looks at me and Kevin and shakes her head. She can hardly speak, and she lifts a hand to her lips, and we know. We nod. The three of us stand in a knot, feeling the same ache, an ache for which there really are no adequate words.
“I can’t even go there,” Mom says. “I can’t even—I just keep saying, ‘If someone has to go now, let it be me.’” And so we stand in the kitchen and cry, because every time we watch Riley seize, no matter how mild the seizure, we can’t help but wonder if a time will come when she will not come back to us. No one has said it’s something to expect–or not–but no one would.
We sink into the couch in the living room and try to watch TV, try to restore our humor. Quiet sits, heavy and hard.
And then suddenly Adam stands in front of us in his pajamas, holding his glucose meter in his hand. The elastic band on his pajama bottoms overlaps his shirt in one place, as though he jerked it there, distracted. I missed the staccato sounds of his feet on the stairs, and it feels like he just appeared right in the middle of my cluttered thoughts. He moves side to side on his feet the way he does when he has something to tell us but can’t quite find the words he needs. So instead, we watch him wobble, silent, wearing an expression that suggests that the words are just stuck on the tip of his tongue, as though he has only just swallowed them accidentally.
“Adam, what is it?” Kevin says.
Silence. back and forth, back and forth
“Adam, what’s your blood sugar?” We try again, having trained ourselves to wait on his efforts to communicate.
back and forth, back and forth, back and forth “412,” Adam finally says. Numbers always come more easily for him than words.
I sigh, sliding down. “Why are you so high?” I say, but not really to Adam. I search my mind for data–what his blood glucose was at supper, what he ate, if maybe something could have been miscalculated, and is this part of any pattern?
“Well, let’s just add a little to the correction,” Kevin says, reaching for the PDM that controls Adam’s insulin pump. He pushes the buttons quickly. When Adam hears the beep signifying delivery, he reaches to take his device, zipping it back into the case. He will go to bed now, will drift to sleep without worry, resting so deeply that he’ll hardly move in the bed. And of course, that’s what we want. But we’ll not sleep now until we test his blood sugar and know that glucose value is steadily decreasing, until we’re sure he’s well out of danger. We’ll test him every hour, in the dim light beside his bed, knowing that if we see the number climb we’ll have more to do—a urine test for signs of ketoacidosis and water he’ll need to drink to flush poisons from the body. He’ll moan and rub his palm over his nose and turn on his side, but he’ll not even know we’ve come into the room unless we find reason for more concern. He jogs up the stairs and away, and we settle again into the couch, sharing a fleeting glance of acknowledgement.
Of course. Of course he’s high. The thought rips through my mind and lingers, a bitter poison, and with it all the insidious, ugly things that haunt the dark corners of the human heart. The TV mumbles, but I’m not really listening. Heavy with me sits the truth of the weight we carry, the chronic challenges, the terrifying responsibility. It’s too much. It’s too big. It’s too hard. It’s too sad. And what if…A sob presses thick in my throat.
My phone chimes, a text I expect from a friend. She has spent the second half of a rare date night with her husband in the ER, fighting her own shadows. She texts to tell me she’s on her way home. I’m loopy with medication, she types. And then, this, simply: Happy Easter! He is risen!
I sit staring at the words, so deceptively simple. And yet those words change everything.
For the last hour, I’ve slipped slowly into the grave, swallowing dust, and I’ve completely forgotten. Tomorrow is Easter. It’s Saturday night, but Sunday comes. Sunday always comes. The morning comes. He comes. I pick up my phone, feeling as though I’ve just remembered how to breathe.
So you’re loopy on medication, and you say just the thing I most needed to hear, I type. I’ll explain later. Happy Easter! He is risen, indeed!
I often wonder what the Saturday night before resurrection Sunday felt like for the disciples, the men who gave up everything to follow the Christ. Surely that night their fear-cloaked lives felt deeply dark, heavy, impossible. Likely they sat in the dim light feeling the bones in their fingers, trying to remember their humor or what they had done before, wrapped with weariness, thinking too much, too big, too hard, too sad. And what if… They did not have the benefit of the knowledge I have now, not then. They couldn’t see that far. They had no way to hold the testimony in their hands. That night, the truth remained unspoken. For them, all was lost. Everything they hoped in was senselessly over. John, at least, could not even wipe from memory the bloody, ripped up sight of Him hanging there, though this probably wasn’t the way he wanted to remember. Never have three days known more grief than the days before the resurrection. Never has there been a heavier weight, a greater tragedy, a more impossible than the night before they heard the words He is risen!
It isn’t lost on me, the fact that on the Saturday night before Easter, HE let me taste that bitter gall, just the tiniest measure, just so HE could obliterate my shadows with His Truth. So suddenly I sit full giddy with joy, seeing it all clear, this way He lets us taste the Truth and also reflect it right in the tasting. And that’s when I find my smile. He is risen, indeed! So, Saturday night smells of rot and I can feel my bones with my hands, and I know without question how small and weak I am. But Sunday comes, and I see clear that it’s never really been about me or what I can manage. On the contrary, it’s always been about all I can’t accomplish on my own, about everything only He can do.
It’s always been just this: He is risen.
He is risen by the power of the Spirit and the grace of a Loving Father, for me, in spite of me; and nothing else—not the ugly, not the painful, not the weary hard—nothing.else.will.ever.overtake.that.truth. I sit licking the sweet sugar of it off of my lips. In this world you will have trouble. But take heart! I have overcome the world (John 16:33).
It’s a comfortable thing we say on Easter weekend: He is risen! He is risen indeed! But the truth is that it isn’t just a mantra for a holiday. It’s a truth we live and breathe, right through every dark, impossible Saturday night, even as we stare death right in the face; even as we feel the clay from which we were formed; even as we taste surely that we have no control and no power of our own. Yet will I hope in Him (Job 13:15). Resurrection living boldly, faithfully acknowledges that Sunday always comes. He lives. Yes, life is terribly hard, and it hurts, and I don’t know what will be except this: the resurrection comes. He redeems it all. See, I am making all things new (Revelation 21:5).
So let this be my testimony, just as Saturday night falls dark and hopelessly lost and a bitter ache settles over the heart, every single time the enemy threatens and slowly, we slip together into the grave. Oh yes. Let my life shout it clear, bold:
He is risen. He is risen, indeed.
But when they looked up, they saw that the stone, which was very large, had been rolled away. 5 As they entered the tomb, they saw a young man dressed in a white robe sitting on the right side, and they were alarmed.
6 “Don’t be alarmed,” he said. “You are looking for Jesus the Nazarene, who was crucified. He has risen! He is not here. See the place where they laid him. 7 But go, tell his disciples and Peter, ‘He is going ahead of you into Galilee. There you will see him, just as he told you. (Mark 16: 4-7)’”