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Author’s Note: This is a Non-fiction Literary Mosaic Writing about Logan, his epilepsy and a little thread. If you aren’t familiar with the Mosaic writing form, think of it as a video, or a movie, which each section forming its own separate, yet related, story. What follows is a hard-hitting, emotional, no-holds-barred look at my little guy with Epilepsy–it’s an expression of angst and celebration.
In The Silence
This morning I went looking
And my mischievous boy I did find
He was hiding, sleeping
pale cheeks and dark lashes
a picture of innocence
overwhelming in its intensity
his left arm discernable by
the rhythmic beat of his little hand
against the Spongebob blanket.
The duality of the scene
won’t let go.
hypoxia /hy·pox·ia/ (hi-pok´se-ah) reduction of oxygen supply to a tissue below physiological levels despite adequate perfusion of the tissue by blood.
Watching your child turn blue is a paralyzing experience.
Over the years I’ve become hardened to its effects in the moment of crisis, but I have never been able to shake the blinding terror that hits me after the fact, after the crisis is over.
He showed me the Berber sample, the perfect square of crisp colors whetting my appetite for the vision of what those floors would look like.
“Oh, yeah, this is the best. It’ll stand up to it all.”
“Three autistic kids?”
What about life? Could it stand up to life?
I chose the off-white combination with the stain shield and two-year guarantee.
Years later, there are stains from spills and it sags in the middle from being cleaned too many times.
Logan was far too quiet; in the kitchen I paused when I heard a thump, muted as if against carpet. Some part of me recognized the sound.
I yelled for my husband, who has that same sixth sense whenever he hears that shake in my voice, and we slide into a well-rehearsed medical drama, complete with terms just like the experts.
Logan is on the floor. His eyes are large and fixed, seeing nothing.
I slide in front of him on the floor, phone already out and open to the clock, poised to call 9-1-1 at the cut- off. Jim slides behind him, white and green plunger filled with Logan’s emergency meds in his hands, which are slightly shaking.
“Is he breathing?”
“It doesn’t look like he’s breathing.”
“Okay, we’re almost at a minute, counting from when I heard him fall.”
We see scattered remains of these threads in the oddest of places. From a kitchen chair where Logan left it behind after eating, to outside the front door, where it was carried over the threshold by little feet eager to go to school. Outside the front window, one thread hangs, a lone testament to Logan’s determination to push it through the crack in the top of the window, along with cups and plates and sheets of papers.
It’s his statement, his way of marking the house as his own, of discovering this place he feels most comfortable. It’s a carpet string and an eyesore to grandma, an embarrassment because that loose threads and missing carpet fibers aren’t supposed to be. A house should be orderly, the carpet goes on the floor, and never out the window.
It’s the embodiment of our home, where nothing is as it should be, but just fine because it’s ours. The carpet isn’t where it should be, the threads aren’t all in place and clean of marker doodles and stains that won’t ever come clean. The single threads, in their temporary footholds over the top of windows, on the edges of chairs, hiding between the cushions of the couch, mark individual vestiges of Logan’s mark on his world.
For a baby or young child who has not reached puberty, give 2 breaths and 30 chest compressions, 5 times in a row (about 2 minutes).
If the child is still not breathing, call 911 or other emergency services.
Note: If you see a child collapse, call 911 before starting rescue breathing or CPR.
It’s a minute since he’s collapsed, and Logan is beginning to turn a pale gray, more of a blue right around his lips. His skin is so pale it looks translucent, and the veins appear in complex patterns across his skin.
At a minute, we begin rescue breaths. At three minutes we call 9-1-1. We have to call 9-1-1, sometimes, but other times he begins breathing again as his seizure suddenly stops, his muscles no longer locked and unable to do the brain’s bidding.
This time I begin the rescue breathing, tossing the phone to Jim. Breathe in. Breathe out. And again.
Come on, Logan.
He looks so tiny.
Damn it, come on!
Breathe in. Breathe out. And again.
My husband watches me as I start the compressions again. I’m the one who took the training class for just this purpose. His eyes follow every flex of my muscle, and flick back to the stillness of Logan completely seized.
I think, had he realized it would feel like this, he would have taken the class too.
Logan owns this bit of thread, from the moment he realized that there was a short tuft of carpet, just begging to be pulled, to now as he gently but firmly pulls against the course fibers.
It isn’t enough that he has literally pulled up part of the carpet from one end of the room to the other, by the time he’s done he will have thoroughly learned the feel, taste, sound – anything to do with this one little corner of his world.
I can’t help trying to pet the arm gently, as if doing so would stop the harsh jerk and release as the seizure carries on.
I have to pull back, hand over my mouth and one deep breath, before I gently pull him on his left side, into the recovery position. As close to the recovery position as I can rotate his arching and jerking limbs.
He throat arches and his mouth, lips a washed out pink against pale grayish blue, his mouth begins making the small chewing motion as those muscles, too, are caught up in the seizure.
I nod and we trade, the phone slides into my waiting hand, cold and dead, as he begins unbuckling Logan’s pants. Then his diaper. It seems so impersonal, somehow–undressing a child to give them medicine to save their life.
“9-1-1, what is your emergency?”
As he’s worked the thread loose, he pushes segments of it between his fingers, against his face, into his mouth, and back again to run between his fingertips. He will have discovered that the carpet tastes less like candy and more like the dog fur he helped himself to yesterday. There are hints of the cookie he ground into that section of the floor last week. Mixed among the flavor is the distinct texture of coarseness, the rough scratchy, resilient fibers almost defiant in his treatment of them.
Eventually the novelty of tasting will wear off and the art of feeling the string, from tip of his liberated portion to the end still trapped against the floor, will begin to take shape. It isn’t enough to simply touch the string, he will have instead painstakingly moved one, two and more fingers against the surface of the thread, pulling taut and providing the tension that produces just a little more thread, to the sound of tearing free from well-placed and earned footholds in the foundation of the carpet itself. He will grab hold with his full, grubby hand and pull, delighting in the pull, the pinch, of the thread against his palm.
I watch with heavy eyes as Jim carefully inserts the plunger before I focus again on the words I am telling the operator, one hand straying to wipe away the bangs from Logan’s forehead as I talk.
“…male, epileptic, he’s in a grand mal but it started out as a partial. I don’t know if he hit his head. I started rescue breathing at a minute but had to stop because he went into the grand mal.”
I recite the words I know too well, eyes already straying to the door.
I leave Jim with Logan as I get up to open the front door and my lip trembles before I take a deep breath and push the fear away. I don’t have time for it right now.
I hang up with the operator so that I can put the dogs up. One time I forgot and they weren’t happy about the EMTs crashing into their house.
On my way back through the kitchen and into the living room, I realize that one of the boys left a dirty sock and his pajamas in the middle of the floor. I pick them up and my eyes stray to Logan, whose whole body is jerking now.
Jim is curled over him, cooing in his ear and gently trying to wrap his arms around his flying limbs.
I look down and realize that I haven’t swept the carpet in a while.
I look out the window again and then back down at the floor. Damn.
They’re going to think I suck.
There’s cereal bar crushed in over there, and a ground up cracker behind Jim. Bright marker lines swirl in uneasy patterns here and there.
My kid is dying and they’re going to think I’m a bad mom.
Our first time walking on the brand new carpet in our first home, purchased and bought and painfully proud of, was a statement of belonging, of taking the house for our own, for our children.
Sounds are muted,
The edges of my vision blurs wetly
Only one face draws my focus
His fragile breath the only sound I strain to hear
Instead he lies small and still
Lips and fingers locked and fading
While I in helpless study struggle, longing
Desperate keening for eyes to open
Burnt lashes on a mottled cheek lay wetly
The sound I long to hear
Echoes loud, wet, harsh
Yet is so sweet to desperate ears
His eyes, color stripped to black, do open
Shocked, pained, confused
Warmth returns slowly, awareness of Sounds; sirens sing and dogs whine softly His breath louder still
His arms find me
Warmth and comfort
I take and give
Have you submitted your own special needs-themed creative expression? You may email all submissions to email@example.com and I look forward to posting more phenomenal examples of our real world, expressed, in the way only another special needs parent can express.