Emily

My sweet little girl. This photo was taken in the NICU on July 23, 1982. It was the first time I saw my baby and the only photo I have of her. She was whisked out of the delivery room almost immediately after her birth and I did not get to hold her or see her or even hear her cry.

Emily lived for eighteen hours and thirty-one minutes. A lifetime.

She was born in the night and lived to see the sunrise. She was held by her parents and her grandma. She was baptized. She was loved.

She was so many things, just none of them long enough.

Emily was a Trisomy 13 baby, which is always fatal. Most Trisomy 13 pregnancies are miscarried.

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

Emily’s body was donated to science for birth defect research.

She is always near and dear to my heart and never 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 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.