I appreciate your curiosity and concern. It warms my heart to know you care. I love discussing my daughter; she is truly remarkable.
Here’s something important you should know: She can hear you. Not only can she hear you, but she also understands what you’re saying about her. And she can respond to your questions, as she is right here with us.
I’m honestly at my limit when it comes to questions about her hands. I just can’t do it anymore.
Do you realize that her skull has been meticulously taken apart and reassembled? My heart has been stretched and stitched together countless times over these past four years. Can you fathom that we haven’t had a week free of medical appointments, procedures, therapies, surgeries, or consultations in over 1,500 days? We have never stepped outside without encountering stares, comments, or overly enthusiastic smiles her entire life. Have you ever considered the overwhelming joy that might cause a child’s heart to race? Or the concern that her eyes could protrude too far from laughter?
Have you worried if that glazed look in her eyes was due to fatigue or something more alarming? A simple stomach bug or a serious medical condition? Do you experience moments where you wake up in a panic, feeling sick to your stomach, praying your child is okay? Have you witnessed friends lose their little ones? Do you know what the pediatric ICU feels like? Do you know the hospital menu by heart? Is there ever a moment of calm for you?
This is the raw truth. It’s something I struggle to articulate, a feeling so profound it’s hard to describe. I feel shattered in ways that may be beyond your understanding. I am navigating treacherous waters, knowing I don’t have the strength to swim. This is pure fear.
There was a time when I longed to feel something—anything at all—pain, regret, desire. What I feel now, this weight against my breath, is everything I ever imagined emotions could be, and then some. It is overwhelming in a way that words cannot capture. It is more than enough to keep me grounded.
Can you see the frustration in her eyes? The impatience with your stares and questions? She doesn’t need to conform to notions of “normal” or “complete.” What she needs is authenticity. She needs love. She deserves to be seen without judgment.
So, I urge you to confront your discomfort. Embrace your need for “normal.” Sit with your questions about her condition. Imagine what it would be like to be reduced to something that needs fixing.
And don’t forget to ask her about her dreams. Just today, she excitedly told me she wants to be a mother, a nurse, a big sister, and even a firefighter!
Stop overlooking her and directing your questions to me. Her name is Lily. She is four years old, and she can hear you.
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In summary, everyone has unique experiences and challenges, and it’s important to approach them with empathy and understanding. Let’s focus on having meaningful conversations with those who matter most, like my daughter.