The weather was uncharacteristic for Albuquerque in early November. A stiff rain pelted the aluminum hull of the aircraft as we deplaned; a chill in the air as a cold front swept across New Mexico. The weatherman predicted snow by morning. But for a moment, as we made our way to Lucy’s house, a late sun cut through the clouds and splintered through the ridge line of the Sandia Mountains on the Eastern Edge of the Rio Grande.
I grew up with identical twins. My cousins Anna Beth and Lauren. For years I couldn’t tell them apart. To help, my Aunt Theresa would paint Anna Beth’s nails pink and Lauren’s nails lavender to help others tell the twins apart. On April Fool’s day she’d reverse the twins’ nail colors for a laugh.
Anna Beth and Lauren had their own personalities, but when they wanted, they could be a single unit. It was like a magic trick. They could tap into a shared consciousness that I could never understand, only observe, an unexplainable bond that only exists somewhere in the mystic.
Lucy and Bonnie-Ray Hott were born 10 minutes apart and two months early on Christmas Eve, 2008. As if life in the NICU isn’t hard enough, one of the identical twins, Lucy, had additional complications. Lucy was born with clubbed feet, her knees bowed inward like an hour glass. Her curved back showed signs of extreme congenital scoliosis. Her identical twin sister, Bonnie-Ray, is not affected at all. Beyond Lucy’s physical birth defects, something even more sinister lurked at the base of Lucy’s spine.
Lucy was diagnosed with an extremely rare congenital disorder called Sacral Agenesis. She is lacking some of the bones she is supposed to have in her spine and tailbone. Lucy was born without a sacrum. You know the sacrum as the bone that gives curvature to your butt. But the sacrum plays a crucial role in spinal cord development. Located at the inferior end of the spine, it forms the solid base of the spinal column where the spinal cord attaches itself. Without a sacrum, Lucy’s spine is left floating.
This causes a number of complications. Lucy suffers from a dysfunctional bladder and bowels because of her affected nervous system. She has no sensation in her lower back and buttocks. Lucy spends two hours of her day just going to the bathroom. I’ll spare you the details of this but it is an unpleasant experience. Lucy fatigues very easily which makes walking difficult; she spends a majority of her time in a wheelchair.
If her spine is pinched, she could be paralyzed at any time. But worst of all, when the spine rises and the cord doesn’t grow at the same rate – it will break. There is nothing anybody can do to prevent this.
When the spine rises.
Lucy is six years old now. Puberty is around the corner. As her body grows up, she will leave her spine behind, the event will likely paralyze her from the waist down. In some ways, Lucy is a ticking time bomb.
Her physical problems have turned into social problems as well.
Now in first grade, Lucy wears leg braces and spends 100% of her time at school in a wheelchair. Most of the kids at school are kind to Lucy but there are bullies. She’s the only person at her school with physical deformities and kids can be so cruel sometimes. But Lucy doesn’t flinch. She stares them down, holds her ground, doesn’t cry or tremble… until she gets home. At home she collapses into her mother’s arms. It’s a daily ritual, and every day Lucy tells her mother the same thing, “I won’t let them see me cry.” For a 6 year-old girl who reads at college levels, Lucy is wise beyond her years. “Let them have their laugh”, she tells mom, “I’m stronger than they are.”
Lucy has a loving home. Her mother, Tasha-Kay is a grade school teacher and her father, Carl, is headed back to college to get his law degree. Tasha-Kay and Carl are also foster parents. They are currently fostering two adorable kids, 4 months and 18 months old. They hope to adopt. With Carl headed back to University, the family is solely reliant on Tasha-Kay’s teaching income. I know, there’s a joke in there somewhere.
The rental home the family occupies is not handicap accessible and, with Lucy’s condition worsening, the home is slowly closing in around Lucy. The narrow halls and cramped bathroom snag her wheelchair. When I ask Lucy what the worst part is she doesn’t hesitate, “The door to my bedroom is a no-fun door.”
Last week, Brian, Angie, and I boarded a plane to Albuquerque. We wanted to meet Lucy…
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UPDATE #1: $10,000 in 45 minutes!!!!
UPDATE #2: $15,000!!!
UPDATE #3: $20,000! The home stretch!
UPDATE #4: $25,000!!!! Goal hit and we’re off to the races. Lucy’s family is watching. Needless to say they are currently in shock 🙂
UPDATE #4: Come back from dinner and $35,000!!! This is amazing!
UPDATE #5: $40,000! Thank you, Chivers.
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