I genuinely appreciate your curiosity and concern. I love sharing stories about my daughter, who is truly remarkable.
Let me share something important:
She can hear you. Not only can she hear you, but she also understands every word you say about her. And guess what? She’s right here, able to respond to your questions herself.
I can’t bear to answer another question about her hands. I just can’t.
Do you know that her skull has been reconstructed piece by piece? My heart has been stitched back together, over and over, for the past four years. Have you realized that we’ve never had a week without appointments, procedures, or therapies for 1,527 days? Do you understand that we’ve faced stares and comments every single day of her life? Have you ever felt your child’s heart race from joy? That her laughter could cause her eyes to bulge with glee?
Have you ever paused to wonder if her vacant expression was due to fatigue or something more serious? Do you know what it feels like to wake up in fear, crawling to your child, praying she’s still breathing? Have you seen friends bury their little ones? Are you familiar with the pediatric ICU? Do you know the hospital menu by heart? Is there ever a moment of calm?
This is our reality. I struggle to express the depth of these feelings. I am overwhelmed. It feels like a ship with an unfixable leak, and I’m constantly bailing water, exhausted and breathless.
Today, as I walked through the hospital, I told my daughter, “I didn’t know that rubber band was going to hurt.”
But I did know. I felt sick for weeks leading up to it. It was just one small blood draw—she’s endured so much worse. Yet, I lied because I’m the one who brings her into these terrifying moments. I gently lift her from her cozy bed and hand her over to doctors and needles, knowing the fear that awaits.
I am broken in ways you’ll never fully comprehend. I’m navigating a stormy sea, aware that I may not make it. This is my fear.
There was a time when I longed to feel something, anything—pain, regret, or desire. But now, this feeling of dread that weighs on my breath is all-consuming. It’s more than I ever imagined, too much and just enough to keep me tethered to this world.
Can you see her frustration, her impatience with your stares and questions? She doesn’t need to fit into the mold of “normal.” She needs authenticity, love, and eyes that don’t shy away from her differences.
So, I invite you to sit with your discomfort. Embrace your need for “normal.” Sit with your questions about her life and how she might fit into it. Imagine what it would be like to be reduced to something that seems broken but isn’t quite fixed yet.
Speak to her. Ask her what she dreams of becoming. Just today, she shared her aspirations of being a mother, a nurse, a big sister, and even a firefighter.
Her name is Lily. She is 4 years old. And yes, she can hear you.
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