Pearl Joy Brown is the third child of Ruth and Eric Brown. At the Browns’ 20-week prenatal appointment, Pearl was diagnosed with lobar holoprosencephaly (HPE), a neural disease with low chances of survival. Despite a grim prognosis and a doctor’s encouragement to abort the pregnancy, the Browns opted to embrace life and hope and carry Baby Pearl to term.
Peal Joy Brown was born on Friday, July 27, 2012 – 4 lbs 3 oz, and very much alive. This is my letter to Pearl.
How do I begin a letter to a little girl with more courage than I know? How do I write words to a story already so full of life? What can I say that hasn’t already been said about your beauty, your strength, and the hope you bring to this strange world?
Because Pearl, we live in a strange world.
We live in a twisted world where beauty is measured by the smoothness, color, and symmetry of your body, the curve of your hip, and the number on a scale. When some people see you, they don’t initially see the beauty that you bring to the world, because in the wisdom of the world, flaws must be covered. Weight must be lost. Teeth whitened. Make up applied. Defects avoided. Diseases aborted. For the sake of exterior brilliance, we ostracize the inner beauty of a quiet spirit, a generous heart, and a kind word.
But you, pearl, you remind us that life is more than exterior beauty. That God makes us in his image – not in the shape of our face or our body, but in the spirit inside us, breathed into us. You have that image. You are beautiful. You were knitted together in your mothers’ womb – and there are no mistakes there. You are not a mistake.
You and I live in a world where where a doctor would tell a family to end their child’s life because there are obstacles along the way. We live in a world where children much sicker than you and much healthier than you aren’t given a chance to be miracles. We live in a world where God’s providence has been supplanted by man’s convenience and knowledge. But doctor’s knowledge only goes so far. A doctor once told your parents that you wouldn’t make it, Pearl. And he was wrong. How many other doctors never had a chance to be proven wrong?
What if a doctor had told my parents to let me go, simply because he saw from an ultrasound that I would be abused at age 12? “Don’t put her through that pain,” he might say. “It’s not fair,” others might quietly think to my parents, who keep me in the world knowing there will be trouble ahead.
But Pearl, your courage, and your parents’ courage at this time is a reminder to us all. In this life there will be trouble. We are guaranteed that. We were all born with a genetic defect called death. Your brother put it more eloquently, when he said “No one knows if they’ll turn into a grown up. Not everyone gets to turn into a grown up while they’re on earth.”
You have changed me, Pearl. You’ve reminded me of truth. You’ve reminded me of my mortality. You’ve reminded me of a creator that faced all obstacles to save me. You’ve reminded me that a life full of challenges is still a life worth living – because it’s the life we’re all living.
Read more letters to Pearl here, here, and here. The Washington Post also wrote a letter about Pearl, here.