It was an ordinary afternoon, albeit one filled with unique challenges. After a long day at work, I hurried home, swung open the door, and dropped my bag on the floor, eager to greet my one-year-old daughter, whose tiny legs dangled from her high chair.
“Look who’s here!” I exclaimed, using sign language to communicate. Her face lit up with joy, and she clapped her hands enthusiastically as my partner joined in, creating a heartwarming welcome-home moment that ended with a tender group hug. “I missed you so much,” I whispered, planting a kiss on her forehead before rushing to the sink for my routine of sanitizing my hands and arms, followed by a spritz of disinfectant for good measure.
Nearby, the 60 mL syringes containing her next meal were warming, and my partner had laid out her G-tube extension, prepped with medication for our 4:30 p.m. schedule. Since we brought her home from the NICU after an eight-month stay, where she was diagnosed with chronic lung disease and received tracheostomy and gastronomy tubes, our lives had morphed into a rhythm of feeding, suctioning, sterilizing, and managing her complex medical needs. Amidst this whirlwind, we also found time for snuggles, kisses, and playful moments filled with love.
Suddenly, the doorbell rang, jolting me from my thoughts. I glanced at my partner, eyebrows raised in surprise. It was RSV (respiratory syncytial virus) season, and we were under strict precautions against germs. Uninvited visitors were not part of our routine.
“I forgot to mention,” my partner started, heading towards the door, “I called the repair service to check our locks.” He unlocked the door and reassured me it would be quick.
As the door swung open, two repairmen stood at the threshold. I managed a smile as I held the large syringes and G-tube extension in hand. My daughter, ever the social butterfly, clapped again in delight at the sight of potential new friends.
I carefully attached the G-tube extension to her mini button and began administering her meal through the syringe. While my partner chatted with the repairmen, I noticed one of them—a young man—stealing glances at us. I could sense my protective instincts surging. I imagined how our situation appeared to them: a baby with tubes protruding from her neck and abdomen, oxygen tubing trailing along the floor, and a concentrator humming in the background. We had grown accustomed to this setup, but I wondered how intimidating it must seem to others.
I mentally rehearsed my responses to the inevitable questions I assumed would come. “Micropreemie.” “1 pound, 10 ounces.” “Severe preeclampsia.” “Chronic lung disease.” “231 days in the NICU.” “Time and growth.”
As their conversation shifted from technical details to casual chatter, I held my breath, hoping to avoid any awkward comments about our medically fragile daughter. She turned to me, her trach tube creating a cheerful squeak as she expressed her joy.
“Thanks for coming by, guys,” my partner said as he began to close the door.
“Your daughter…” the younger repairman blurted out.
Here it comes, I thought, bracing myself.
What’s wrong with her? Why does she have that? Is she sick? Will she be okay?
“Your daughter,” he continued, “is the most adorable baby I’ve ever seen.” He paused, and my heart swelled with emotion. “I just wanted to say that,” he added, shyly looking down.
I turned to my daughter, whose eyes sparkled, mouth beaming, and hands clapping, and finally exhaled. Yes, I agreed silently. She is adorable and remarkable, stronger than anyone in the room.
My partner and I choose to overlook the medical devices surrounding us, instead focusing on our beautiful daughter—much like any other child. And in that moment, someone unexpected recognized her beauty too.
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Summary
: A parent recounts the daily realities of caring for a medically fragile child while navigating societal perceptions. The unexpected kindness of a repairman highlights the beauty and strength of their child, reminding them to focus on love and joy rather than their unique challenges.