Unbreakable: Despite brittle bones, 4-year-old leads full life
"It's those who are comfortable — and easy," she said. After all, someone nervous and tentative handling a child who shatters is a recipe for disaster.
Like others with OI, Nathan has a short body, though his head is normal size and he's very smart. Those with OI are also plagued by loose joints and muscle weakness. The medical journals speak of brittle teeth and curved spines, as well as eyes whose whites are sometimes stormy grey or blue. Rachel and Ryan believe his eye whites become a pale blue when a fracture is imminent. He will have to wait to see if some of the traits, like hearing loss, develop. That's typically two or three decades down the road.
He has chronic bone pain and he must exercise every day, stretching out on his belly, then placing his hands so he can arch his back and raise his head, strengthening both arm and neck muscles while stretching his back. It's hard work. And though his head is only in the 1 to 2 percentile on growth charts, it's big for his body.
Several times a year, he goes to Shriners Hospital for an intravenous injection of a treatment for osteoporosis. It eases the chronic pain for a while, though not too long.
Still, the little boy's surname is a great fit. He's pure sunshine, happily demonstrating his robot moves or how he can lick his own elbows (his arms are too short to reach much, but the lack of decent collagen makes them very flexible and that aspect, at least, amuses his mom).
A fracture makes him quiet and more tentative at first. Right now, he's been several weeks without one and is more playful and rambunctious. Yet, compared to most kids, he's relatively subdued in action, though not in spirit.
His high tolerance for pain is a good thing. Last August, he was sitting in a chair and fell forward, breaking both his arms. He was heartbroken because he couldn't hold his treasured little white teddy bear. He couldn't feed himself. Really upset, he told Rachel, "This one's all better," so she'd unwrap one of the arms and let him use it. "He'd rather have the pain than have both arms wrapped up," she said.
Sometimes he cries when he breaks. Sometimes he just seems less Nathany, more subdued and sad. His pain tolerance is exceptional, but the fractures hurt him. His sunny nature goes behind a cloud. Whether it's a storm cloud or not depends on the bone.
Often, depending on the fracture, they just have to let it heal. His bones are too weak to support casts.
It's a balmy May day — a rare dry, sunny one in a recent string of rainy Saturdays — and Nathan's taking his sister and brother for a ride on his wheelchair while they wait for his turn at bat. He plays in the Miracle League on the Angels team, with kids from 3 to young adult who have a variety of physical and mental challenges. Today, they face off against the Braves.
Nathan's mom is the coach, though she admits she's no baseball fanatic. Her son loved it last year, but when she called about the league this year, she was told they were looking, so far without success, for a coach.
"I said I guess I could do it," Rachel said. "I didn't want him to lose the experience."
Courtney, 6, is his best friend in the world. She's careful with him, gentle, but unafraid as she tosses him the ball and teases him. Right now, though, she's standing on one of the giant casters on the back of his chair, next to their little brother Jason, as they make figure 8s on the asphalt at the Gene Fullmer rec center.
Some of the children make the home run circuit in wheelchairs, like Nathan. Some use walkers or walk painstakingly. One little girl holds her mom's hand as she circles.
It's a game where no one sits out, no one gets booed and everyone makes it back home safe.
Email: firstname.lastname@example.org, Twitter:loisco
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