It was an ordinary afternoon in our household. After a busy day at the clinic, I rushed home, threw open the door, and smiled at my one-year-old daughter, whose legs swung playfully from her high chair. “It’s Mommy!” I exclaimed, signing “Mommy” with a tap of my thumb to my chin. Her face lit up with a big smile, and she clapped her hands in delight as my husband joined in their joyful welcome, culminating in a heartfelt embrace.
“I missed you so much,” I whispered, kissing her forehead before heading to the sink to wash my hands—a ritual of soap, hand sanitizer, and a spritz of disinfectant, a habit formed during our time in the NICU. The 60 mL syringes prepped with her next meal were warming in the sink, while the G-tube extension lay meticulously arranged by my husband, ready for her 4:30 p.m. medication. Since her complicated eight-month stay in the NICU, which included a diagnosis of chronic lung disease and the placement of both a tracheostomy and gastronomy tubes, our lives had become a whirlwind of feeding, suctioning, and sanitizing. Among these tasks, we also found joy: snuggling, kissing, and playing with our beautiful girl.
Suddenly, the doorbell rang, catching me off guard. I exchanged a worried glance with my husband; it was RSV season, and we were strictly avoiding visitors. “I forgot to mention,” he said, moving towards the door, “the garage door company is here to check the locks.” He opened the door, and two repairmen stepped inside.
With giant syringes and G-tube extension in hand, I greeted them with a smile. My daughter was ecstatic, clapping at the unexpected guests. I discreetly attached the G-tube to her Mini button beneath her ribcage and began feeding her through the syringe. As my husband chatted with the men, I noticed one of them—a young man—glancing our way, clearly curious.
In that moment, I felt a surge of protectiveness. I envisioned how we must appear to them: a baby adorned with tubes, the oxygen line trailing along the floor, and an oxygen concentrator humming in the background. To us, this was normal, yet I couldn’t help but wonder how intimidating this scene might seem to someone unfamiliar. As I sang “Itsy Bitsy Spider” to my daughter, it dawned on me how overwhelming our reality could look from an outsider’s perspective.
I mentally prepared for the questions I expected to come: “Micropreemie.” “1 pound, 8 ounces.” “Severe preeclampsia.” “Chronic lung disease.” “231 days in the NICU.” “Time and growth.”
As their conversation with my husband shifted from technical terms to light banter, I held my breath, hoping to navigate the encounter without any awkward inquiries about our medically fragile child. Just then, my daughter created a squeaky sound through her trach tube, grinning widely.
“Thanks for stopping by,” my husband said, beginning to close the door.
“Your daughter…” the younger repairman blurted out.
Here it comes, I thought, anxiety creeping in.
What’s wrong with her? Why does she have that tube? Is she sick?
“Your daughter,” he continued, “is the most adorable baby I’ve ever seen.” He paused, and my heart soared. “I just wanted to share that.”
I looked down at my little girl—eyes sparkling, mouth beaming, hands clapping—and let out a breath I had been holding since their arrival. Yes, she is adorable, I silently agreed. And amazing. Stronger than any of us in that room.
In that moment, both my husband and I chose to overlook the medical paraphernalia surrounding us, focusing instead on our beautiful daughter—a baby just like any other. And for once, someone else—a stranger without obligation—saw her that way too.
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In summary, as a parent of a special needs child, it’s easy to become consumed by the medical aspects of their care. However, it’s essential to remember the joy and love they bring into our lives. Sometimes, all it takes is a reminder from a stranger to see beyond the tubes and equipment to the beautiful child at the center of it all.