A Right Or Privilege

An Insight: Who’s life is it, anyways?

A 14 year old girl with Cystic Fibrosis wants to die…

I’m tired, Daddy:

“I want to die” she said.

The beeping machines beeped.
The breathing tube breathed.
The IV drip, dropped.
The Cystic Fibrosis, ate.

“Don’t say things like that to your mother” said Dad, crossly.

The patient looked at her small hands, laced with pretty tubes that pierced her skin, easing the pain, itching like hell and burning.

She didn’t tell her family that part, she didn’t tell her doctors.

She was tired of complaining all of the time.

It was a waste of breath and breath was precious.
It hurt to breathe, too.
It hurt bad.

The breath left her lungs; clawing, tearing, raking….
It came back in like a lamb.

She couldn’t hide this fact.
The pain was in her face like living stitches.
The pain was in her eyes.

The tears burned more than anything else, she knew.
She was very aware of how much the tears burned.

She was angry that the IV’s and tubes kept pumping replacement tears into her body.

Countless, endless bags of tears….

Enough, already.

She was tired…. So tired of crying.

“That’s no way to be” said Mom, quietly; with tear stitches of her own.

“I want to die” said the patient.

“Stop it!” cried Dad “Stop that pity pot shit, right now!”

“Honey” said mom, turning to look at her husband’s heaving shoulders and gasping back.

“You have to be strong” Mom said, turning back to the child.

“I’ve been strong my whole life, mom” whispered the girl, looking slowly up from her clasped hands.

“I can’t remember not hurting” she added. “That ain’t living, it’s dying.”

Mom looked at her.

“I’m already dead….” the girl, sighed

The patient laid back on her pillow and slowly placed her tube riddled hand on her mother’s.

A feather was heavier.

“This ain’t no life, Mama” she said, distractedly looking out the window as if following her precious words out, into the sunshine.

“Everyday is precious” said Mom.

“To you, maybe” said her daughter looking back at her with a sharp glance; “To me, nothing is worth this” She held up the tubes and shook them.

“You’re being rude to your mother” said Dad gently, but sternly; putting his hand on the patients bed rail. “That’s awful hurtful talk”

He lowered the rail and sat on the edge of the bed, looking back over his shoulder at his little girl. “Your mama don’t deserve that”

The patient looked at her Dad.
The Dad looked at her.
The beeping machines beeped.
The breathing tube breathed.
The IV drip, dropped.

Mama looked between them; silent argument tennis.

“I want to die” she whispered; her screaming eyes fixed on her father’s.

He dropped his gaze under the weight of her pain.
His hands were clinched…
Not letting go of his hope for an instant.

“No” He said.

The patient tried to scream, but couldn’t.
“I hate this! You think I wanna live for this! You think I wanna live with something inside me, eating me up, cutting me down, turning me rotten and crippled from the inside out, knowing I’m gonna die from it! Knowing it’s gonna kill me, knowing there ain’t no way to stop it!?”

The machines beeped louder.
The oxygen tube hissed angrily.
The Cystic Fibrosis, ate.

She gasped, falling back on the pillow.

This had all came out in one priceless, ripping breath.

Dad reached for her; she grabbed his wrist, tugging his big, shaking hands to her dry lips.

Dad could feel the cold oxygen between his fingers.

Mama walked around him and sat on the bed, putting her arm over her daughters head, running her fingers thru her child’s gorgeous hair.

“Shhhh” whispered Mama. “You gotta calm down, baby” She leaned over and kissed her child on top of the head “You gotta….”

“Gotta..?” hissed the patient “What do I gotta do?” “All I gotta do is die slow”

“Stop it” said Dad.

Mama’s lips were still pressed against her child’s head; her eyes squeezed tight as her pain spilled into the patients hair.

“I ain’t letting this kill me” said the girl.”I’m cheatin’ it”

Dad said “Stop this” his fist on his chest.
Mama kissed and bled more eye pain.

New face stitches…for everyone.

“I’m wanna kill it before it kills me”

“There ain’t no cure and there ain’t no chance” she said, looking at her dad; her hands pressing his hands against her chest as if trying to force him to pull her heart out.

She continued “I want them to take my body and study it” “I want them to figure out what in the hell was eating me alive!”

Daddy could barely feel her heartbeat.

She gasped…
The machines beeped angrily
The oxygen tube clouded up and whined.
The dust danced in the sunlight.
No words to be seen, now.

The patient slowly reached up and took her mother by the hands, looking hard at her father,willing him to meet her gaze.

Her father looked up and almost cried out.
There was fight in her eyes.
There was determination
There was hatred
There was vengeance….

……. She was serious. It struck him like a blow.

“No” He said and looked away, watching his will to defy her fly out the very same window her precious breath had flown.
The machine beeped quietly.
The oxygen tube purred.
The IV drip, dropped slowly.

He looked at her when her small hands fell from her mother’s….

She had fallen asleep.

“I don’t want to lose my baby girl” Dad said to the sunshine.

Mom was quiet.

Dad looked over his bowed shoulder again and fixed his wife with his own determined stare.
“I ain’t gonna lose my girl” He told her.
….. Almost a question.

Mama just played with her baby’s hair, pulling it’s long tresses thru her shaking fingers.

When Daddy started to reach for her, Mama jerked her arm away from him, slapping at his face and outstretched hand, hissing like a angry cat
“Don’t touch me!!”

Daddy stood up, almost falling; struggling thru her one swinging hand, grabbing her forcefully; God she was strong!

He jerked his wife against his racking, sobbing chest; holding her tight, pressing her face into his shoulder as he buried his in her hair.

His eyes leaked pain and shimmered thru the breath stealing sunlight, staring into a void, a barren future, nothing; He couldn’t, he wouldn’t let his baby girl go!

They too….. were dying.

Every minute of every hour of everyday they watched their daughter die a little bit.

Some days, she died more.

What kind of life is a life when a good day is one where your child only cries and screams a few times….?

They died as much as her when the agony shrieked from her body…. Well, when she still had energy and breath to shriek.


Seems like a thousand years ago.

Now….there was no shrieking. Now she could only gasp and weep beneath her covers, clawing at her pillows, trying not to drown in the middle of her bed.

They couldn’t hear her cry out, anymore.

She had a bell, beside her bed.

He feared bells, now.

His wife was quietly sobbing, her swinging, scratching hands around his back “What do we do, honey?” “What do we do?” she pled, her eyes shiny with all of the pain in the world of a mother who’s child is dying.

Helpless, hopeless, lost, confused, angry, murderous…hopeless.

The machine beeped louder.
The oxygen tube gasped.
The IV drip, dropped.
The killer kept killing….

“Parents, do no harm” the patient said.

The parents looked at her.

She was awake and looking past them.

“Spare me this” she whispered into the fading sunlight.

There was nothing to hold onto.
No anchor, no port, no battlements…
No hope, no cure, no divine intervention… Only each other.

But…their strength was failing them.

Their daughter was going to die. One way or another.

“I’m tired, you guys” whispered the girl

She put her hands above her head and forced a crying gasp from her lips, her eyes lifted to the ceiling.

The hospital room light shone on her pain stitched face as she weakly cried out;

“Do you hear me… GOD!? I’m tired of hurting, I’m tired of crying, I’m tired of Medicine, I’m tired of doctors, I’m tired of pain, pain, pain……. GOD!”

She spread out her arms toward a last, stubborn, lone ray of sunshine that had dared to approach her anguished appeals.

She fell back onto the pillow, the strand of sunlight slipping from her fingertips like a golden ribbon.

She had surrender in her eyes.

She looked at her parents.

“I’m tired of dying all the time, you guys” she said.

[Authors note: I have to stop now. I’m making myself cry. I have children of my own and know that I would rather die the most horrible death than watch my child die before my eyes. Take me instead,,OH, lord! Take me!
I’ve said those words… In a hospital, in a Chapel… Take me Lord, not him.
I’ll start again tomorrow when I’ve thought on this most terrible of nightmares for a parent to never awaken from. I pray, that none of us have to ever experience this. Because it’s real life and shit happens….. Terrible, terrible shit. I’m sorry… I’m getting emotional again. I’ll see y’all tomorrow. God willing and the creek don’t rise] 

– Your friend,

4 thoughts on “A Right Or Privilege”

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