“Watching your child skin a knee is bad, but seeing her in pain every day is horrible,” says Stephanie Clayton’s mother, Denise. “I wish I could just take it all away.”
Stephanie was born with an omphalocele, a condition where abdominal organs grow outside the body. Several surgeries put things back in place, but Stephanie suffers from intestinal failure. “Pain rules her every minute,” Denise says.
Medication, music, psychotherapy and art help Stephanie cope. On bad days, Stephanie’s face is pale and pinched, but when her intravenous tubes are covered up and she looks well, you can’t tell she’s hurting. “She’s very misunderstood, and even our expectations are high — we forget she’s battling pain all the time,” Denise says.
Her daughter just wants to be like other kids and learn to snowboard (and skate and horseback ride). She joined a snowboarding class and when it was too painful to walk up the hill, she crawled up, then boarded down. “We’re grateful for a pain team that lets her live and play the way she wants to,” Denise says. “It’s a stressful, complicated life, but we just live day by day and hope.”