My hours blend into days, the days into weeks, weeks into years, and though the time passes, little changes for our seven-year-old boy. It’s as if he were standing alone—if he could—in the center of a time-lapse landscape video, clouds streaking by like ghosts, days and nights flickering past in blinks of time as the sun and moon see-saw in the sky, as long shadows creep across the landscape before receding into the night. The seasons pass; autumn leaves die and fall to the ground, snow smothers everything then spring begins to emerge in a thickening of green and bloom. But amongst all this evolution our Calvin remains mostly unchanged, like a static pillar of rock in the center of the beautiful scene, time flitting busily by him as he stands fast, the world seemingly unaware of his presence if not for his shivering form.

But I am aware ... I know. My boy is changing. The top of his auburn head reaches about midway between my belly button and my solar plexis. His face thins out, his teeth grow in, his limbs lengthen into smooth slender straps of muscle and skin, not much fat save tiny morsels smaller than a mandarin orange slice just at the back of his knees. Sadly, Calvin’s physical changes underscore his lack of cognitive and developmental changes. He still cannot walk without assist. He cannot utter words. His expressive and receptive communication abilities are practically non-existent. He can reach for us if we are near, he can try for his sippy cup if it is next to him on a table, he can sit up and kneel in his bed and pound the safety panel to beckon us, he can kiss our faces if our heads are touching.

But Calvin still crawls around the house like a little baby—coos like one too—drools as much if not more than a teething infant. He plays with his toes on the changing table, he puts everything into his mouth, he’s still struggles against gravity in negotiating the stairs, but he’s been better at it before. And although we have seen progress I can count the times that the tulips have come up then withered—come up again then withered—yet Calvin is still doing the same things he’s done since he was two, with little to no improvement.

And I know deep down in my gut, where it's dark—sometimes heavy, sometimes hollow—that this virtual plateau in Calvin’s development, the one that keeps him at some twisted place between infant and toddler, is primarily—if not entirely—because of the seizures and the drugs.

But just as the Grand Canyon’s impressive erosion secretly continues on for millenniums, just as its river snakes and meanders, slowly carving its own story into the stony facade while the clouds gather and shower infinite rains that sculpt and smooth the plateau—the sun and moon rising and setting over its face—just as these changes are imperceptible to the naked eye, so remains Calvin; mostly unchanged.

But our boy is enduringly beautiful with a capacity for love bigger than the broadest canyon, the widest river, the deepest, black-green sea or the expanse of cloudless sky that holds forever in its infinite palm.

Please share Calvin's story. Help bring us one step closer to a cure for epilepsy. We can't do it alone.

photo by Michael Kolster

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