Hey there, curious minds! First off, thanks for your interest and concern—it truly warms my heart. I love sharing stories about my daughter; she’s an exceptional little human.
But let me clarify something for you:
She can hear you.
Yes, she not only hears your questions about her but also comprehends what you’re saying. And guess what? She’s capable of answering those questions herself because she’s right here with us!
Honestly, I’ve reached my limit when it comes to inquiries about her hands. I really can’t handle it anymore.
Did you know that my daughter’s skull has been meticulously taken apart and reassembled? Meanwhile, my own heart has been stitched back together, clumsily, time and again over the last four years. For 1,527 days, our lives have revolved around a continuous cycle of appointments, therapies, and procedures. We’ve never gone anywhere without receiving stares, comments, or overly enthusiastic grins directed at her.
Have you ever pondered the thought that your little one might burst with joy from a tickle? Or that their laughter could lead to tears? Have you questioned whether that glazed look in their eyes is due to sleepiness or something more serious, like increased intracranial pressure?
Do you wake up in a panic, feeling sick to your stomach, crawling over to your child (who is just two feet away but still attached to monitors), praying they’re okay? Have you witnessed friends bury their children? Do you know the ins and outs of a pediatric ICU? Or how about knowing a hospital menu by heart? Do you ever experience a moment of peace?
This is the raw truth. I can barely breathe under the weight of it. I can’t encapsulate these feelings in a way that does justice to the depth of my experience. I’m devastated. It feels like a gaping hole in a boat that’s desperately trying to stay afloat. I’m constantly bailing water, trying to keep it together.
Today, I strolled down the hospital halls and told my daughter a little fib. I said, “I didn’t know that little rubber band was going to hurt.”
But deep down, I knew. I felt sick about it for weeks, but I put it off for as long as possible. It was just one small blood draw—she’s faced far worse. Still, I lied. I lied because I am the one who brings her into these nightmares. I pull her from her cozy bed and wrap her in blankets, only to hand her over to scalpels and needles.
I am broken in ways you can’t even begin to fathom. I’m navigating a perilous sea, and I know I can’t swim. This is fear.
I remember a time when I yearned to feel something—anything at all: pain, regret, desire. Now, this feeling that weighs heavy against my chest is everything I ever imagined, and so much more. It’s overwhelming yet just enough to keep me grounded.
Do you see her frustration? Her impatience with your gazes and questions? She doesn’t need to be “normal” or “fully functional.” She just needs authenticity. She needs love. And she needs eyes that won’t shy away from her differences.
So, sit with your discomfort. Sit with your desire for “normal.” Sit with your questions and imagine what it’s like to be reduced to something that seems broken but isn’t.
And don’t shy away from asking her who she wants to be. Just today, she excitedly told me she dreams of being a mother, a nurse, a big sister, and even a firefighter!
So please, stop looking past her and directing your questions at me. Her name is Lily, and she’s 4 years old. She can hear you loud and clear.
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Summary
This heartfelt message emphasizes the importance of directly engaging with children who have physical differences rather than directing questions towards their parents. It highlights the emotional journey of a mother navigating her daughter’s challenges and encourages others to recognize her individuality and aspirations.