It was an ordinary afternoon. After a hectic day at work, I burst through the door, tossed my bag aside, and beamed at my one-year-old son, whose pudgy legs swung from his high chair. “Mommy’s home!” I exclaimed, signing “Mommy” by tapping my chin. His face lit up with a joyful smile, and he clapped his hands as my partner joined in their little welcome-home dance, culminating in a warm group hug. “I missed you so much,” I whispered, kissing his forehead before heading to the kitchen sink to begin cleaning my hands with soap, followed by sanitizer, and perhaps a spritz of disinfectant spray for good measure.
In the sink, 60 mL syringes filled with his next meal were warming, while my partner had meticulously laid out the G-tube extension and prepared his afternoon medication. Since we had brought him home from the NICU after an eight-month stay that included a diagnosis of chronic lung disease and the placement of both a tracheostomy and a gastronomy tube, our lives had become a whirlwind of feeding, suctioning, venting, bagging, sterilizing, priming, and disinfecting. Amidst all this chaos, there were also moments of snuggling, kissing, and playing—fierce love intertwined with our daily routines.
Suddenly, the doorbell rang. Startled, I exchanged glances with my partner, eyebrows raised in surprise. It was RSV (respiratory syncytial virus) season, and we were under strict precautions against germs. Unscheduled visitors were not part of our daily life. “I forgot to mention,” he said as he moved toward the door, “I called the garage door people to check on our locks.” He unlocked the deadbolt and opened the door. “Just a quick visit,” he assured me.
Two repairmen stepped inside. I smiled and greeted them, giant syringes and G-tube extension in hand. My son’s face lit up at the sight of the new visitors, clapping in excitement. I discreetly connected the G-tube extension to the Mini button under his ribcage and began to slowly administer his meal through the syringe. As my partner chatted with the men in the foyer, I noticed one of the repairmen observing us. He was young and quiet, nodding along to the conversation but stealing glances in our direction.
Casting a glance at my son, who was still smiling and waving, I felt my protective instincts surge. I imagined how our situation appeared to them—a baby with tubes attached to his neck and abdomen, oxygen tubing trailing down the hallway like a lone strand of holiday lights, an oxygen concentrator hissing softly in the background. Saline bullets and sterile water containers cluttered our coffee tables. While my son’s special needs felt entirely normal to us, I realized how daunting this must seem to an outsider.
I mentally rehearsed my responses to their likely questions: “Micropreemie.” “1 pound, 8 ounces.” “Severe preeclampsia.” “Chronic lung disease.” “231 days in the NICU.” “Time and growth.” I listened as their conversation shifted from technical language to casual banter. I held my breath when the older repairman tore off a carbon copy of the invoice. Would we navigate this interaction without an awkward comment or innocent question about our medically fragile child? My son turned to me, puffing air around his trach tube, producing a squeaky sound of approval as he grinned widely.
“Thanks for coming by, gentlemen,” my partner said as he began to close the door.
“Your son…” the younger repairman interjected.
Oh no, here it comes. I tensed—Mama Bear instincts kicking into overdrive. What’s wrong with him? Why does he have that tube? Does it hurt? 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. “I just wanted to share that,” he added, looking down shyly.
I glanced at my little boy beside me—eyes sparkling, mouth grinning, hands clapping, and legs kicking—and exhaled the breath I’d been holding since their arrival. Yes, I silently affirmed. Yes, he is adorable. And incredible. And stronger than anyone in this room.
My partner and I consciously choose to overlook the tubes, wires, and medical supplies surrounding us. Instead, we focus on our beautiful, perfect son—a baby just like any other. And, for once, someone outside our family—someone completely unexpected—saw him that way too.
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In summary, this poignant experience illustrates the duality of life with a medically fragile child. While challenges abound, the moments of joy and connection can shine through, inviting understanding and appreciation from others.
Keyphrase: “medical needs parenting”
Tags: [“home insemination kit”, “home insemination syringe”, “self insemination”]