8 yo angel finds faith amid struggles
Published: January 3, 2006
The day after Christmas.
Hitting the outlets, picking over cold turkey, grumbling about gifts.
But not for the Green-Edmundson family and their 8-year-old daughter, Brooklyn. Monday was a flight to Baltimore to meet with a specialist Tuesday to decide when exactly she is to have her legs dislocated and a partial hip replacement.
For many, going through what Brooklyn has had to endure so far in her short life — chronic rheumatoid arthritis, 13 operations before she was 5, including three on her mouth for a cleft palate and eight on her severely clubbed feet — might lead them to curse the heavens. [Conquering Rheumatoid Arthritis: The Latest Breakthroughs and Treatments]
Yet Brooklyn yearns for the divine. “Do you know guys,” she tells her bemused friends, “there’s this really cool place that’s free where you can go and learn about God?”
But in November, when one of her team of surgeons at the Shriners Hospital for Children said she’d have to have the tops of her femurs cut off and her legs rotated or she could face paralysis, Brooklyn asked her mother, “Why doesn’t God love me?”
Her parents, Malinda and Harold, are devoted to Brooklyn’s medical team at Shriners. “They truly want to help children,” Malinda said. “It’s been wonderful to have them in our lives.” But the enormity of the operation they are recommending left them no choice. They decided to seek a second opinion.
“I want to make sure this absolutely has to be done now,” Malinda said. Three percent of children with diastrophic dysphasia, a form of dwarfism, have to have hip-replacement surgery. “But it’s not even on the charts for a child Brooklyn’s age,” she said.
Malinda wrote a seven-page, tear-stained letter to Dr. Michael Ain, pediatric orthopedic surgeon at Johns Hopkins Children Center in Baltimore. She told him how Brooklyn was born without the roof of her mouth — if she opened her mouth, you could see into her nasal cavity — a recessed chin, an ulna deviation that meant her hands were constantly raised upwards and club feet. Nine months after birth, she then developed a 47-degree curvature of the spine that required her to wear a thoracic brace for three years. The chin, arms and spine were resolved non-surgically; her feet, however, show the scars of the surgeon’s knife. She refuses to wear skirts because she thinks her legs are “gross.”
The appointment with Ain brought both good and bad news.
“He said he wouldn’t recommend the operation on her hips,” Malinda said, opting instead for a drug injection and neuromuscular therapy that doctors believe will reduce pain and loosen the tight grip of the muscles around her hips.
But while the family appreciated the delay of the hip surgery, Ain also discovered that Brooklyn has scoliosis in her right shoulder blade and neck. [Growing Up with Scoliosis (A Young Girl's Story)]
“We had no idea,” Malinda said. “Do I feel better or worse now? I don’t know.”
That Brooklyn is a fighter is undeniable. She has defeated every medical prediction: that she’d never reach 4 feet (she’s already 3 feet, 8 inches), that she wouldn’t walk until second grade (she started walking when she was 3), and that she’d have great difficulty talking (she’s a giggly chatterbox with a deeply soulful stare).
If Brooklyn’s conversation is largely “adult,” her other concerns are very much age-appropriate.
“She’s at that age,” says her mother, “where what other kids think about her is all that matters.”
Like many other little girls, Brooklyn walks around school during recess with a friend, Rija, and giggles about a boy they both like. Under her jumper she shows off a pink T-shirt that says “Blame my sister.”
Struggle as she might to fit in, there are aspects of her life that mark her apart. When she stands up, she has to sway constantly side to side not to lose her balance. Each morning when she wakes up, she has to have her legs massaged because if she puts her feet down straight away, she falls over.
Afraid of surgery, she has a very high tolerance for pain. The only thing she said about a raging six-month-long gum infection after a dentist discovered it was that it had itched. Her constant pain, though, has also given her an empathy for others’ suffering.
“We were standing in a queue in a supermarket,” Malinda said, “and she went up to an old man in front of us, took his hand and rubbed it, telling him he’d be all right. I told him I was sorry for her annoying him. He turned ’round, tears in his eyes, and said it was fine. He’d been diagnosed with cancer that week.”
Her mother is convinced her daughter is here for a higher purpose. This girl, who is nicknamed “the angel” by her family, “has changed all of our lives.”
There is one area her parents have resisted. Her parents both say that negative experiences with their respective religions (Malinda, LDS; Harold, Catholic) turned them away from their churches. But with this new crisis, Brooklyn’s religious needs mean they have to confront their own attitudes toward God.
“It’s crystal clear this year we have to renew our faith in some way,” Malinda said. “She has so many questions, so deep, we don’t know how to answer.” [When God Doesn't Make Sense | Where Is God When It Hurts?]
For Brooklyn, questions of faith have an extraordinary importance. “She said to Harold,” her mother said, ” ‘Look me in the eye, tell me the truth, does Santa Claus exist?’ ”
Malinda begged her husband to give Brooklyn one more Christmas. “It was wonderful the look on her face when she heard the Christmas stories.”
But behind her questions lies a struggle that only someone who has spent her life in hospitals, with doctors and nurses, can understand. In the world of adults that she has grown up in, she is, her mother says, “fighting every day to remain a child.”
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