I appreciate your curiosity and concern, and I’m grateful for your interest in my daughter. She is truly remarkable, and I enjoy sharing her story with others.
However, I want to clarify something important:
She can hear you.
Not only can she hear you, but she also comprehends what you’re saying about her. And she is right here, able to respond to your questions directly.
I can no longer address inquiries about her hands. It’s become overwhelming.
Did you know that her skull has undergone multiple surgeries, requiring it to be taken apart and reassembled? For the past four years, my heart has been fractured and mended repeatedly, often clumsily. We haven’t experienced a single week without medical appointments, procedures, therapies, or surgeries in over 1,500 days. Throughout her life, we have faced constant stares and unsolicited comments wherever we go.
Have you ever worried that a simple laugh could cause her eyes to bulge too far? Or questioned whether that dazed look was merely sleepiness or a sign of something more serious?
Do you wake up in a panic, checking on her while she sleeps just a few feet away, connected to monitors? Have you witnessed the heartbreak of friends who lost their children? Do you know what it’s like to navigate a pediatric ICU or memorize the hospital menu? Do you ever feel at ease?
This is the harsh reality I live in, and it’s difficult to articulate the depth of these feelings. My heart feels like a sinking boat that can’t stay afloat; I am constantly bailing out water, exhausted from the effort.
Just today, I walked through the hospital, telling my daughter, “I didn’t know that little band around your arm would hurt.”
But I did know. I had been anxious for weeks, delaying the inevitable. One small blood draw—after all she has endured—seemed trivial. Yet, I lied to her, as I often do, because I am the one who brings her into these distressing situations. I carry her from her warm bed and wrap her in blankets, only to hand her over to a world of needles and fear.
I am struggling in ways you cannot fully grasp. I am navigating treacherous waters, acutely aware that I am not equipped to swim. This is fear.
I once longed to feel any emotion—pain, regret, desire. Now, the sensation that sits heavily in my chest is enough. It is more than I ever anticipated feeling, surpassing any expectation I had. It is both overwhelming and grounding, keeping me present.
Can you see her frustration? Her impatience with your stares and questions? She doesn’t need to meet some standard of “normal” or “perfect.” What she requires is authenticity, love, and understanding from those around her.
So, I encourage you to confront your discomfort. Reflect on your desire for “normal.” Sit with your questions about her condition. Imagine being reduced to something perceived as “wrong” that hasn’t yet been fixed.
Ask her what she aspires to be. Just today, she expressed her dreams of becoming a mother, a nurse, a big sister, and even a firefighter.
Please stop bypassing her and directing your inquiries to me. Her name is Lily. She is four years old. And yes, she can hear you.
For more insights into the journey of parenthood, you may find this article on couples’ fertility journeys helpful. Additionally, for those interested in home insemination, check out the Impregnator at Home Insemination Kit for expert guidance. For a comprehensive overview of in vitro fertilization, visit this Wikipedia page.
In summary, while it’s essential to satisfy your curiosity, it’s equally important to engage directly with individuals like my daughter. She has her own narrative, aspirations, and deserves to be seen for who she is, not merely defined by her differences.
Keyphrase: Understanding physical differences in children
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