Emily

My sweet little girl. This photo was taken in the NICU on July 23, 1982—the first time I saw my baby, and the only photo I have of her. Immediately after her birth, she was whisked out of the delivery room. I never got to hold her, see her, or even hear her cry.

Emily lived for eighteen hours and thirty-one minutes—a lifetime in my heart.

Born in the night, Emily Anne Elizabeth lived to see the sunrise. During those precious hours, she was held by her parents and her grandma. She was baptized, and above all else, she was deeply loved.

My daughter embodied so many things, though none of them lasted long enough.

Emily was a Trisomy 13 baby, which is always fatal. Textbooks explain that most Trisomy 13 pregnancies end in miscarriage.

If she had lived, Emily may have been blind and deaf. She also faced severe brain issues, hydrocephalus (a large head caused by fluid on the brain), and microcephaly (a small and underdeveloped brain).

Ultimately, I chose to donate her tiny body to science for birth defect research. That decision allowed her brief life to ripple outward in ways I will never fully see.

She is always near and dear to my heart—and she will never be forgotten.

when Emily died
my world was gray
and muddled
not knowing what to do
from one day to the next

months passed
and my world turned red
I was angry and bitter
searching desperately for
something to blame

months turned to years
and the anger faded
my world was blue
fine on the outside
but underneath everything
and intense unbearable sorrow

decades later Emily brought
warmth and peace
my world didn’t end with Emily

it began
I feel gratitude and awe
my world was yellow

today – acceptance
my world is white
pure, shining,
brilliant white
full of love and resolve
my world is stunning,
blindingly white

and full of purple
bold, royal, and everywhere
regal, majesty, glory, and grace

God has brought me to this place.

peace. finally.
peace.