By Mary Owen
Swimming at the Stayton Family Pool is helping Finley Parker meet life with a difficult disease head on.
“We knew being in the pool would be a huge part of Finley’s life from the start,” said Shannon Parker of her 4-year-old son who was born with Osteogenesis Imperfecta, more commonly known as Brittle Bone Disease.
“We had a hot tub at our first house with him, and you could tell how relaxed he was in the water. The weight was lifted from his bones, and it was soothing.”
The Stayton mom said Finley loves swimming at the pool, an activity that strengthens his bones and lifts his spirits.
Aquatics Director Billie Maurer advocates for Finley, and is quick to welcome him back when he misses a session, she said.
“That sort of inclusion is pretty rare for him and feels great,” Parker said.
“Every lifeguard and coach has taken extra care to figure out how to handle him and keep him safe. Billie allowed me to go in with him the first few times, and after that, I let him do group lessons on his own. That was a huge deal for us.”
Parker said swimming, one of the few sports Finley will be able to do, is important for him to gain strength.
“I feel so lucky to be in this community with this group of people and the Stayton YMCA is a huge part of that,” she said.
The family, including dad, Vic, and older sister, Emerson, moved to Stayton in 2012 to build a home that is accessible and comfortable for Finley, and near Vic’s family.
Wishbone Day acknowledges and
celebrates individual, family
and community life of those who
have Osteogenesis Imperfecta, or OI,
a genetic condition that causes bones
to break easily. For more information,
visit www.wishboneday.com.
Since birth, Finley’s life has been challenging, Parker said.
“We knew something was different with this pregnancy in the womb when he had bowed femurs,” she said. “OI was on the list of possibilities, but not at the top.”
But shortly after his birth, his mom said Finley was obviously in pain. Subsequent X-rays showed numerous fractures throughout his body.
After spending several days at Doernbecher Children’s Hospital in Portland, OI was confirmed.
“Our greatest advantage at the time was a Yahoo group dedicated to families with OI where we learned about additional treatments and more cutting edge approaches,” Parker said. “Finley has since had three surgeries to put expanding titanium rods in his legs and receives infusions to make his bones stronger.”
OI is a genetic condition that causes bones to break easily. Even the slightest fall or a wrong movement, his mom said, can break one of Finley’s bones, making it difficult for him to lead a normal little-boy life.
“We want Finley to live as normally as possible, but we also want him to understand his limits and what could hurt him,” Parker said.
“For example, he knows somersaults are a bad idea. Instead, he runs at his bed and does a side roll onto the mattress, which is on the floor. It’s a way of having some control over his own body, but respecting the fact that he’s not allowed to roll forward and compromise his neck.”
Despite spending a decent portion of his life in his wheelchair, having several surgeries and at least 20 broken bones, Finley’s mom said he has “totally blown away the expectations of a child born with severe OI.”
“He started showing an interest in walking, and after his first rods were put in his femurs, he did just that,” she added.
“He is a funny kid with a huge personality. Certainly, he is my more stubborn child. He is quick-witted and smart, starting to read at 3 years old and doing math shortly after that. We have grown a lot as a family through this experience.”
As their son interacts with his peers, the Parkers stay close by to make sure he stays safe.
“It’s a delicate balance because no one wants to be a helicopter parent, but it’s either that or a broken bone, which completely alters his world for weeks or months after,” Parker said.
“We get invited to birthday parties at Super Bounce, and it breaks my heart for him. He just can’t get in there and participate. So we try to do things a little different, show up late, bounce on our own after the party, that sort of thing.”
A highlight for Parker is watching her loved ones rise to the occasion.
“My parents and Vic’s parents have been there for us from day one,” she said. “My daughter is full of empathy and is one of the kindest children I know, in part because of this. His cousins and aunts make him feel normal and special at the same time. We are truly so lucky with our families.
“I’ve met some amazing mothers who are dear friends that help me get through the hard times right after a break,” she added.
“Most of all, watching my boy beat the odds and do what experts thought he would never do, that is the biggest highlight.”
Living with OI is tough, and Parker said her family copes by living as normally as possible.
“Even when Finley is in his wheelchair, we try to maintain normalcy,” she said. “Finley doesn’t’ let his fractures make him sad for long. He is still smiling, laughing, cracking jokes and dancing. His overall attitude is a really positive one.”
The Parkers invite community members to join them in wearing yellow on May 6 for Wishbone Day, an international day of awareness for OI.
The event grew out of a discussion at the Australian OI Conference in 2008 and was first celebrated in 2010.
Today, the Wishbone Day acknowledges and celebrates individual, family and community life for those who have OI.
For more information, visit www.wishboneday.com.
