In a quiet moment, early in the morning – I hear a scream like none I’ve ever heard before coming from upstairs. Unsure if it’s a dream or the reality of an early rising, I half-sit up in bed. With Bethany, one scream is fluke, two a distinct pattern, and three means hell came early.
Waiting for a moment, I hear nothing but a strange creaking emanating from the electronic baby-monitor that we’ve positioned on the window ledge. “What in the hell could that sound be”? I think through the haze of a partial nights’ sleep. Suddenly the creaking, high-pitched moan and shifting of sheets is clearly heard through the cheap microphone.
Having your heart go from a resting rate of 50 beats-per-minute to that of a second period wrestler’s heart rate is a horrible sensation. It’s horrible for a wrestler, even worse for the one who wrestles with a special needs child and beyond all imagination for one who is both wrestler of and father to the child now having a grand mal seizure.
Racing up the stairs of an old house in the dark, half asleep, half unsure of what you’ll find or do when you breach the top stair is nothing but a series of unfolding horrors. You’ve gone from resting to racing, furious to fearful, curious to crashing in less than 7 seconds. Pulling open the door and flipping on the light, a most horrifying spectacle is revealed – a contorted, sort of human-like thing lies in front of you. Hands, curiously twisted inwards in a peculiar spiral, pointing a strict five-finger pose as if attempting to reach something in the bottom of a honey-jar. Her head twisted to the left perfectly following the contortion of the jaw line. Eyes – empty of everything, dead in all respects. From somewhere in this awkward arrangement of misplaced features comes that strange, throaty creaking; the sound of stressed bone and organ – struggling for air, life, familiarity, balance. Unable to find any, it continues twisting the poor girl in search of its version of peace – its grip ever tightening, relentless, uncaring.
Her legs seem to have learned something from watching her arms as they too bear the contorted, fetal twist and patterning seen in the arms. Her poor feet, bruised from kicking the bottom of the bus seat twist as if looking for something to grasp; a remnant from some primal instinct that says, “climb away from danger”. Funny how the feet are the only features responding appropriately – the rest of her is on its’ own.
Every muscle in her body is working in opposite directions at once and the resulting mass is as confusing as it is pathetic. More pathetic still is the father of this child – helpless to do anything but watch the clock, watch the body, watch the minutes turn to hours.
I calm her with words as best I can but in reality, the smooth words and luscious prayers offered up are more for me than for her. The creaking finally stops but this only means that breathing has stopped as well. The blue hue of the lips confirms my fear and the facial twist unfolds a new level of horror. Black and white was bad, but now color makes this nightmare even worse.
At three minutes I’m supposed to administer medication and in the timeframe between awareness and retrieval of my little girl – a lifetime has passed. You guess at what three minutes looks like to someone in the rational world and make your best guess. The diastat looks like a shotgun, and the thought of using it on your poor girl – already such a victim, conjures up that horrible time in life where you had to put down an ailing pet. You know the medicine will save her, but the administering of such a tool on something so precious is more than your rational mind can deal with so it substitutes the absurd.
The quiet room with the little girl made out of tightly twisted rubber bands, suddenly erupts in a painful gasp – the lungs won this argument and the diaphragm capitulates. She begins to breathe, like an old dog at first – then with a slow, rhythmic pattern, she releases the blue in her lips, sends it back to some other bruise on her body for awhile. I too finally begin to breathe – I being to believe that there is a compassionate God and he does care for this little girl. Her face now looks less painful, more frustrated; her feet no longer looking for an escape, her back, more supine.
You’ve both lived through another seizure, another notch in your belt, another data point for the neurologist, and another gray hair for a head rapidly forgetting what color was.
She’ll sleep for many hours now and be madder than hell later. That’s later though – we don’t do “later” in our house. Now is all we can accommodate.