A beautiful life: A rare genetic disorder is taking their little girl away, but Nathan and Christy Golden enjoy the moments they can

A beautiful life: A rare genetic disorder is taking their little girl away, but Nathan and Christy Golden enjoy the moments they can

High Point Enterprise | July 12, 2011 | By Jimmy Tomlin

HIGH POINT – From their living room, Nathan and Christy Golden can hear their daughter, 2½-year-old Callie, cackling joyously in another room.

Is she laughing at Elmo, the mirthful Muppet who always manages to tickle Callie’s funny bone? Or is she laughing at one of her three older brothers – Isaac, Ezra and Peter – who delight in making her laugh?

Truth is, for the Goldens, it doesn’t matter what Callie’s laughing at. She’s laughing.

Meanwhile, Christy’s crying. Not wailing, mind you – just tearing up as she talks about Callie, her precious little girl with the big smile on her face, the twinkling sparkle in her eyes, the infectious joy in her laugh, and the rare genetic disorder – spinal muscular atrophy, or SMA – that’s slowly taking her life.

“We went through a very dark time where, for me, I felt totally abandoned by God,” Christy tearfully recalls. “I felt like I just begged Him to let me take her place – that I would do anything just for her to be OK. … Our dreams for her were just crushed when we learned about her diagnosis. And our assumptions, too: That she would grow up. That she would play sports with her brothers. That one day she would get married and have children.”

Looking back, Christy sees that dark period as just another part of the journey – a time when she agonized over Callie’s bleak future, to the point that she neglected Callie’s present. Gradually, that realization changed Nathan and Christy’s perspective.

“When we see how happy Callie is now,” Christy says, “when we see her playing with her brothers and going to preschool, which she loves, it helps pull us out of the future – a future we cannot even know – and to really just be present with her and for her.”

Even as they watch Callie’s tiny body betray her, Nathan and Christy have determined their daughter will not be defined by how she dies but by how she lives.

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