As a healthcare professional and a parent, I appreciate your interest and concern regarding my daughter. She is truly remarkable, and I cherish discussing her.
However, there’s something important I need to convey:
She can hear you.
Not only can she hear you, but she also comprehends what you’re saying about her. She is present and able to respond to your questions directly.
I can no longer entertain inquiries about her hands. I simply can’t.
Have you considered that her skull has been meticulously reassembled, just as my heart has been repeatedly stitched back together over the past four years? Did you know we’ve faced a continuous cycle of appointments, procedures, and therapies for 1,527 days without a break? Have you ever experienced the weight of stares, comments, and overly enthusiastic smiles every time you venture out?
Have you felt the sheer joy of your child’s laughter mixed with the fear that it might lead to something more serious? Have you found yourself questioning whether a certain look is a sign of sleepiness or a medical crisis?
Do you wake up in a panic, crawling to check on your child, who is just a couple of feet away but connected to monitors? Have you seen friends grieve their children? Are you familiar with the pediatric ICU’s atmosphere? Do you know the hospital menu by heart? Is there ever a moment you feel at ease?
This is the raw truth. I struggle to articulate the depths of this experience. I feel like a vessel with a gaping hole, constantly taking on water, trying to bail it out but never succeeding.
Today, I walked the hospital halls and told my daughter a lie to shield her from the truth. I said, “I didn’t know that blood draw was going to hurt.”
In reality, I had been anxious about it for weeks. I delayed it as long as possible, thinking she could handle it. But as I carried her into another nightmare, I lied to protect her from my fears. I am the one who brings her into these distressing situations, wrapping her tightly in blankets and handing her over to the medical team.
I am broken in ways you may never fathom. I am navigating treacherous waters, fully aware that I cannot swim. This is my reality.
There was a time when I yearned to feel something—anything at all. Now, the weight of this experience is overwhelming and suffocating. It is more than I ever anticipated feeling, and it is both too much and just enough to keep me grounded.
Can you see her frustration? Her impatience with your stares and questions? She does not require “normal” or “complete” functionality. What she needs is authenticity. She needs love. She deserves eyes that do not shy away from her differences.
So, I encourage you to sit with your discomfort. Sit with your longing for “normal.” Sit with your questions of when, how, and why. Imagine being reduced to a mere label, something that could be fixed but isn’t quite there yet.
Consider asking her about her dreams and aspirations. Just today, she expressed her excitement about becoming a mother, a nurse, a big sister, and even a firefighter.
Please stop looking past her and directing your inquiries to me. Her name is Lily. She is 4 years old.
She can hear you.
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Summary
Parents often face overwhelming challenges when their children have unique needs. This piece emphasizes the importance of direct communication with children about their experiences and achievements, rather than reducing them to their medical conditions. By fostering understanding and compassion, we can better support families navigating these journeys.