It was just another afternoon in our bustling household. After a hectic day at work, I hurried through the door, tossed my bag and purse onto the floor, and flashed a big smile at my one-year-old son, whose pudgy legs swung from his high chair.
“Look who’s home!” I exclaimed, signing “Mommy” by tapping my chin with my thumb. His face lit up with a brilliant smile, and he clapped his hands together as my husband joined in their joyful welcome-home routine, which culminated in a warm group hug.
“I missed you so much, sweetheart,” I whispered, planting a kiss on his forehead before moving to the sink to begin the familiar ritual of scrubbing my hands and forearms with soap, followed by hand sanitizer, and maybe a spritz of Lysol for good measure.
The 60 mL syringes filled with his next meal were warming in the sink, while my husband had prepped his G-tube extension and the afternoon dose of medicine. Since we brought him home from the NICU after an arduous eight-month stay marked by chronic lung disease and the placement of both tracheostomy and gastronomy tubes, our lives had become a whirlwind of feeding, suctioning, and disinfecting. Amidst this chaos, there were also moments filled with snuggles, kisses, laughter, and abundant love.
Suddenly, the doorbell rang. I exchanged a surprised glance with my husband. It was that time of year—RSV (respiratory syncytial virus) season—and we were on strict germ lockdown. Unannounced visitors were certainly not part of our daily routine.
“I forgot to mention,” he said, heading towards the door, “I called the garage door company to check our locks.” He unlocked the deadbolt and opened the door. “It’ll just be a moment,” he reassured me.
The door swung open, revealing two repairmen. I greeted them with a smile, holding the giant syringes and G-tube extension. My son, full of excitement, clapped at the sight of new visitors. I quickly and discreetly connected the G-tube extension to the Mini button just below his ribcage and began to administer his meal with the syringe.
While my husband conversed with the men in the foyer, I noticed one of the younger repairmen stealing glances in our direction. He was quiet, nodding along to the conversation yet seemingly drawn to us.
I glanced at my son, still beaming and waving at the men. A surge of protectiveness washed over me as I imagined how our situation might appear to outsiders: a baby with tubes attached to his neck and abdomen, oxygen tubing trailing down the hall like strands of holiday lights, and an oxygen concentrator making soft hissing sounds in the background. Saline bullets and sterile water containers populated our coffee tables. To us, his special needs were the norm, but as I sang “The Itsy Bitsy Spider” while pushing his meal through the feeding tube, I couldn’t help but feel how daunting it must look to others.
I mentally rehearsed the answers to their likely questions: “Micropreemie.” “1 pound, 8 ounces.” “Severe preeclampsia.” “Chronic lung disease.” “231 days in the NICU.” “Time and growth.”
As I listened to them wrap up their conversation, shifting from technical jargon to casual chatter, I held my breath, hoping we could make it through this interaction without any awkward comments regarding our medically fragile child. My son turned to me, pushing air around his trach tube, letting out a squeaky sound of approval as he grinned widely.
“Thanks for coming by, guys,” my husband said, beginning to close the door.
“Your son…” the younger repairman suddenly blurted.
Oh no, here it comes, I thought, ready to defend my baby.
What’s wrong with him? Why does he have that tube? Is he sick? Will he be okay?
“Your son,” he continued, “is the most adorable baby I’ve ever seen.”
He paused, and my heart raced as I prepared for the worst. “I just wanted to tell you that,” he added, glancing down with a shy smile.
I looked at my little boy—eyes sparkling, mouth wide in a smile, hands clapping, legs kicking, and voice squeaking—and exhaled the breath I had been holding since the repairmen arrived. Yes, I silently affirmed. Yes, he is adorable, wonderful, and stronger than any of us in the room.
My husband and I consciously choose to overlook the tubes, wires, machines, and supplies scattered around us, focusing instead on our beautiful, perfect son—a baby just like any other. And in that moment, someone unexpected—a man who didn’t have to say anything—saw him too.
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