We decorated your hospital room instead of your nursery. Newborn photos never captured the joy of first smiles—they were replaced by snapshots of you before heart surgery, tiny and brave, connected to wires and monitors.
“What to Expect When You’re Expecting” seemed to skip the chapter about you entirely.
Your first haircut wasn’t a playful trim—it was a side shave, necessary for an IV. We never had the chance to debate breast or bottle; TPN became your liquid gold.
The sleepless nights weren’t from cries or restlessness alone—they were haunted by phantom sounds, by the relentless beeping of monitors, by the gnawing gut feeling that we could miss the call that would tell us to “get here fast.”
We didn’t get to celebrate milestones most parents anticipate. You never rolled over in triumph, we never argued over who heard your first word. I remember reading the small pamphlet that warned you might never walk, might never speak. I tried, desperately, to ignore the part that said you should have never lived.
It was never our choices or your achievements that made us fit to be your parents.
We never taught you right from wrong, never encouraged you to read a book or ride a bike. The complex, everyday work of raising a child to navigate the world was replaced by a quiet, painful realization: this world may never see you as equal.
Yet every day you were here, even briefly, you taught us how to love.
When we shed the shell of conventional expectations, we were blessed to simply know you.
When we tuned into the piercing silence between the beeps, we could hear your heart, your breath, your rhythm—and find a moment of peace in a place that was anything but peaceful. Priorities that once seemed essential were replaced by the wonder of mundane miracles: a tiny smile, a steady heartbeat, a moment of comfort.
When we stopped searching for perfection, we saw beauty in unbearable positions. Beauty in brokenness. Beauty in holding space for you.
And when you took your last breath, you left behind something no monitor or milestone could measure—the remarkable imprint of life and love you had etched on our hearts.
For every thing you lacked, you embodied God’s grace.
For every flaw you carried, you reflected His perfect design.
For every moment of weakness, you exemplified faithful endurance.
For every limitation, you reminded us of our need for a Savior.
For every loss, you pointed us toward the hope of Heaven.
Now I understand the chapter that was missing from every parenting book: being your parents, even for a short while, was greater than anything we could have ever expected.
