“Most of your child’s brain is not there.”
The words still haunt Melanie Perdue. She can barely repeat them without breaking down. Especially when she recalls what the doctor said next:
“Andrew will only live 12, maybe 15 months.”
It’s 2002 and Melanie’s world has just turned upside down. The only thing she can do is run from the hospital. Her shaking hands are barely able to dial her mother’s number and when she answers, Melanie can only scream. Her special delivery, this seemingly perfect, healthy baby boy, who she and her husband, Lee brought home just five weeks earlier, is not okay. He will never be okay. Andrew was born with hydranencephaly, an extremely rare condition in which the cerebral hemispheres are absent and replaced by sacs filled with fluid. Andrew will never walk, never play baseball, and—according to doctors— will probably not reach his first birthday.
It’s 2010. I’m at World Outreach Church in Murfreesboro, Tennessee. I’m watching this lady standing over a little boy in a wheelchair who cannot support his own head. She’s lifting his arm toward the heavens as music fills the room. She’s glowing. I thought of my healthy daughters. I wondered, what happened to that boy? How does she do it? Would I have the strength to deal with this severe disability? Week after week I watched as Melanie cared for her now eight-year-old son. She steadied his head in his wheelchair. She wiped his mouth. She stroked his hair. She never stopped smiling. We throw the word love around a lot…this, I thought, was love.
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