As a parent, I truly appreciate your curiosity and concern for my daughter’s well-being. Her name is Lily, and she is an exceptional individual deserving of love and respect.
I want to share a crucial point: Lily can hear you. Not only does she hear you, but she comprehends the conversations about her. Even more importantly, she can respond to your inquiries because she is right here with us.
I can no longer entertain questions about her physical differences. It has been an exhausting journey.
Did you know that Lily has undergone multiple surgeries to reconstruct her skull? As a mother, my heart has been torn apart and stitched back together countless times over these last four years. In fact, there hasn’t been a single week without appointments, treatments, therapies, or surgeries for 1,527 days straight. Wherever we go, we encounter stares, comments, and overly enthusiastic smiles. Have you ever thought about how a simple tickle could make your child feel as if their heart might burst with joy? Or how a fit of laughter might seem to threaten their fragile well-being?
Do you ever wake up in a panic, feeling nauseous as you check on your child just two feet away, connected to monitors? Have you witnessed friends say goodbye to their little ones? Do you know what it’s like to navigate a pediatric ICU? Can you recite the hospital menu from memory? Have you ever felt truly at ease?
This is my reality. I find it difficult to articulate the depth of this experience. It feels like an irreparable breach in a vessel that must remain intact. I am constantly bailing out water, fatigued and overwhelmed.
Just today, I roamed the sterile hallways of the hospital and found myself lying to my child. I told her, “I didn’t know that the rubber band would hurt.”
But deep down, I knew. I felt a sense of dread for weeks, postponing a small blood draw that she has faced before. Yet, this time, I lied because I am the one who brings her into these daunting situations. I lift her from her soft, safe bed and hand her over to the harsh realities of medical procedures.
I am shattered in ways you may never fully grasp. I’m navigating turbulent waters, and I feel helpless. This fear is overwhelming.
I recall a time when I yearned to feel something—anything at all. Pain, regret, desire. Now, the feeling that presses against my chest is all-consuming. It’s everything I envisioned feeling and so much more, a depth that words can hardly convey.
Do you see her frustration and impatience with your gazes and questions? She doesn’t need to conform to your standards of “normal” or “whole.” What she requires is authenticity. She needs love. She craves genuine eyes that don’t shy away from her physical differences.
So, I urge you to sit with your discomfort. Sit with your curiosity about her differences. Imagine what it would be like to be reduced to something that needs fixing but hasn’t been resolved yet.
Take a moment and speak to her directly. Just today, she expressed her dreams of becoming a mother, a nurse, a big sister, and even a firefighter. Please stop overlooking her and directing your questions toward me. Speak her name—Lily. She is 4 years old. And yes, she can hear you.
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Summary
This article emphasizes the importance of engaging directly with children who have physical differences rather than relying on their parents to answer questions. It reflects on the emotional challenges faced by parents of children with unique needs and calls for understanding and compassion.
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