The Broadway star reveals how dancing and faith helped her help her son.
“YOU GUYS KNOW WHY YOU’RE HERE, right?” I strode across the wood floor and spread my arms. The kids in the room stood with their backs hunched, eyes downcast to avoid looking at the wall lined with mirrors. I could see their anxiety.
It reminded me of how I’d felt as a little girl on Good Friday. I’d loved going to church. Except for Good Friday. The pre-Easter service filled me with dread. The sanctuary was dark, the cross in the center covered with a shroud. There was no singing or communal Eucharist. Everyone was solemn and silent.
Kind of like the kids in front of me at the dance studio. Lord, help me show them the truth about who they are. I asked. Like you helped me with Chris.
Chris was my 18-year-old son. “He’s going to be a basketball player!” a friend exclaimed the first time she saw him as a toddler. Other friends told me that his long fingers meant he was destined to be a pianist or a swimmer. Sweet compliments. But inside I knew. Something wasn’t right.
I’d known about Marfan syndrome, a rare genetic disorder that affects the body’s connective tissue, for years. As a little girl, I’d had an unusual celebrity crush…on Abraham Lincoln. I’d read that experts believed he may have suffered from Marfan, which would explain his gangly body.
At the time, there was no genetic test to confirm whether Chris had the disorder. Doctors gave me conflicting opinions. All any of us could do was wait for symptoms to manifest. And manifest they did. Chris’s eyesight was poor. His spine began to curve. By the time he was six, it was official. Chris had Marfan syndrome.
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