Blue Fibers

 

---

I wrote this personal narrative for my English Composition class at Regent University, detailing the last couple of weeks of my son Joshua’s life. This was one of the hardest pieces of writing I’ve ever done. LORD willing, it will open the floodgates to write more about my precious Joshy in a future memoir.

---

My face pressed into the worn blue carpet beside my bed. “I can’t. LORD. Please.” I sobbed. The guttural wails of my teenaged son echoed in my head. His mind remained that of a four-year-old, while his broken body had never developed beyond that of a ten-year-old.

 

“Mama, I hurt.” His eyes pleaded with me as he struggled to turn over on the cot in the living room. Mickey Mouse Clubhouse played in the background. He tuned it out a long time ago.

“Oh honey, I gave you all the medicine I can give you for now.” It’s only been an hour. “Oh Joshy.” I brushed my hand over his cheek. Please, LORD. His eyes filled with tears and heaviness piled on.

I don’t know what I’m asking. Uncertainty blankets my every thought. The monotony of G-tube feedings, clockwork medications, clothing and bedding changes, and soul-piercing wails took its toll. Days into weeks, weeks into months. I can’t.

My mom told me about a dream she had about a garden. It’s where she met him again for the first time. He’s tall and handsome. She smiled and walked by.

“Grandma,” he said, “it’s Joshua.” He smiled, free from the constraints of a broken world.

He often spoke about eternal things: angels and picnics and a place where pain and tears are absent. One day, as he sat with his grandma, head on her shoulder, he looked up and pointed, “Is that God?” He had one foot in this world and another in eternity.

Every night it was the same. Knees to carpet, tears to fiber. A surrender of the moment, but not of the will. I could only see my son’s suffering and the anguish smothering my family. We lived for years in quiet expectation, knowing where all this was headed.  Years of specialist appointments, surgeries, hospital stays, and now hospice testified to this truth.

I saw the hand of God too many times to doubt His goodness and sovereignty. Like a well-oiled theological machine, I said all the right phrases and comforted myself and others with doctrinal sentiments as the events passed us by. Thomas Watson and Jeremiah Burroughs attended my bedside, and like Ezekiel, I too, took of God’s word, tasting sweet and bitter.

With every fiber of my being, I knew without a doubt where He was leading us. Where He was leading me. In that moment, and in every moment that followed I pleaded for mercy for my son, but never could I relinquish my idea of control. “Yes, LORD. But not yet.” Eternity reached for my son, but pain chained him to the cot. The weight of it all bogged me down, night after night. In the darkness I sobbed, clutching my pillow with all the fierceness of a mother desperate to help her child. LORD, please. Please take him home.

In the morning the weight was gone, replaced with the same weariness I had walked in for the last decade. It’s Wednesday now. Joshua’s drastic decline in the last couple of weeks precipitated an emergency trip to the pain clinic in Billings.  His pain pump had malfunctioned, explaining the increased pain, dystonia, and vomiting.  “What happens now?” I asked, seeing my broken heart reflected in the doctor’s eyes.

The doctor’s answer is Baclofen administered through Joshua’s G-tube. Even if he can keep it down, it won’t work well. He’s vomited so much lately he probably aspirated.

Joshua looked at me, his eyes like a misty morning. “I hurt, Mama.”

It’s Wednesday, but Monday’s coming.

We drove home in silence. Joshua let his handful of French fries go cold—he’s not hungry, even for a beloved treat. He stared out the window and looked beyond the veil. I knew something had changed. God has answered my prayers, and now, I only wonder when.

Thursday, he continued to decline. My husband and I tried to distract him with favorite movies and toys, and even the hospice nurses, who usually brought much joy to him, found him agitated and restless.

He can’t keep down fluids, not even his pain medicine. He often thumped his chest and cried, “I can’t breathe.” I never felt so helpless, and yet, I knew this was part of Joshua’s journey home. I wrestled with the decision to take him to the hospital, knowing it would only prolong his misery. The orange paper on the side of the fridge detailed the end-of-life decisions made on his behalf some time ago.

Later that night, after the nurse had left, Joshua became animated. He moved and talked more, having boundless energy. Long after I went to bed, he kept his grandma up all night, making a game from empty aluminum cans and chattering endlessly.

It’s Friday now. Joshua has a new favorite nurse. She’s young and pretty. He’s always had a way with the ladies with his generous smile and warm hugs. He bounced to the end of his cot and wrapped his arms around her waist. He asked her, “Are you an angel?”

She smiled, fighting back the tears. His oxygen levels had plummeted lately. The nurses took shifts trying to suction out the fluids with a loud, obnoxious machine. He hated it.

But now, he seemed at ease, and he relaxed back on his cot and resumed watching cartoons.

As the evening went on, Joshua’s breathing became shallower. He lay down next to the couch as if on standby: present in the flesh but already absent in spirit. I wondered what he saw and heard in this moment, still anchored to this world. My husband and I stayed by his side, watching movies and reminiscing. I checked his pulse constantly, as I would over the next few days, simultaneously hoping his chains would break and that he’d linger a little while longer.

The weekend meant waiting. I knelt by Joshua’s side and told him I loved him and that it’s ok to go home. Jesus is waiting. I know he heard me, but something kept him tethered here. Is it for his sake or mine? Only God knows. I traded blue fibers for light brown ones, never wanting to leave Joshy’s side. “LORD,” I prayed, “Let me be there when you take him.” Joshua’s chains are my own, seven years’ worth.

All night, and into the early morning hours, I tossed and turned on the black futon, clutching my tear-soaked pillow. “LORD, please take him. My boy has suffered too much. Please don’t let him suffer any longer.”

Joshua gasped, and I jumped up and rushed to his side. I held his hand and stroked his forehead. “I love you, Joshy. Go to Jesus now.”

It’s Monday, and Joshy’s home. His chains were broken. I leaped up, my arms thrust heavenward. “You’re free, Joshy, you’re free! After I woke up my mom and husband, I called the nurse. In her duties, she collected and destroyed his medications, a symbolic collection of his suffering.

That night I kneeled next to the bed, dry blue fibers caressing my face. Strangely enough, the burden that weighed me down over the last two months had gone. “Thank you, LORD. Thank you for your mercy.” I sank into bed and slept soundly for the first time in years.

Out of darkness, light.

For years, I tried to be everything to everyone, grasping for even a semblance of control in my chaotic world. But God met me at midnight and sat with me through dawn. I met Him often on those worn blue fibers, face down and palms outstretched, pleading for mercy—for Joshua, for myself, for my family. In those moments, I learned to surrender, a lesson I would need repeated often. That night, however, I wholeheartedly surrendered my son.

Joshua was home, and in a small way, so was I.