I appreciate your curiosity and concern. I genuinely love discussing my daughter. She is truly remarkable.
Allow me to share something important: She can hear you. Not only can she hear you, but she also understands the words spoken about her. And guess what? She can respond to your inquiries because she is right here with us.
I’ve reached my limit on answering questions about her hands. I simply can’t do it anymore.
Do you know that her skull has been meticulously reconstructed, while my heart has been torn apart and stitched back together over the last four years? Do you understand that we have faced a relentless stream of appointments, therapies, surgeries, and consultations for 1,527 days straight? Have you ever considered what it’s like to navigate public spaces without encountering stares or comments throughout her entire life?
Have you ever felt your child’s heart racing from excitement? That her eyes might pop from sheer joy? Have you ever questioned whether that distant gaze was a sign of fatigue or something more serious, like increased intracranial pressure? Or whether a giggle was just silliness or a precursor to a seizure?
Do you wake up in a panic, feeling sick to your stomach, crawling to your child (only two feet away, yet still connected to monitors), praying she is still breathing? Have you witnessed your friends lay their babies to rest? Do you know what a pediatric ICU looks like? Are you familiar with the hospital menu by heart? Have you ever felt a moment of true calm in the midst of all this?
This is the reality I face. It’s impossible to articulate the depths of this experience. I am overwhelmed. It feels like an irreparable hole in a vessel that cannot remain afloat. I am always taking on water, bailing as fast as I can, utterly drained.
Today, I walked the hospital halls and told my daughter a little white lie. I said, “I had no idea that rubber band around your arm would hurt.” But I did know. The feeling of dread had consumed me for weeks. I put it off for as long as I could. One small blood draw—she has endured far worse. Yet, in that moment, I lied. I lied because I am the one who carries her into these daunting situations. I pull her from her cozy bed, wrap her in blankets, and hand her over to scalpels, needles, medications, and fear.
I am shattered in ways you can’t begin to fathom. I am navigating treacherous waters, aware that I cannot swim. This is my fear.
There was a time when I longed to feel something—anything. Pain. Guilt. Desire. Now, this feeling that weighs upon me—this constant, familiar thrum—is more than enough. It is everything I ever imagined, and even more than that. It is so much that words fail to capture it. It is overwhelming and just enough to keep me anchored.
Have you noticed her frustration? The impatience that bubbles within her as she senses your stares? She doesn’t need to conform to “normal” or “ideal.” What she needs is authenticity. She needs love. She needs people who won’t look away from her physical differences.
So, I encourage you to sit with your discomfort. Sit with your desire for “normal.” Sit with your questions about when, how, and why. Imagine being reduced to a flaw that could be fixed but hasn’t been yet. Take a moment to reflect and ask her about her dreams.
Just today, she expressed her excitement about becoming a mother, a nurse, a big sister, and even a firefighter. Stop glossing over her and directing your questions to me—her name is Bella, and she is 4. She can hear you.
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In summary, it’s vital to acknowledge my daughter’s individuality and to engage directly with her, rather than deferring to me for answers. Her experiences and aspirations are just as valid as anyone else’s, and she deserves to be seen and heard.