Posted on Apr 19,2017
The idea of your teenager heading off on an 11-day, 100-mile hike is daunting for any parent to accept.
But Jacob Greene wanted to go, and his mother, Lisa, had to wrestle with the decision. The fact that Jacob has cystic fibrosis added to the complexity.
“I had a hard time,” Lisa Greene says. “It was like, wow. I was afraid to let him go, but I knew I needed to.”
The Greenes met with Jacob’s doctors, made precautionary arrangements and yet halfway through the trip, the ice Jacob needed to keep his medication cold wasn’t available. Still, Jacob persevered and Lisa later learned that things can work out all right.
“He’s OK,” she says. “It was not my first choice, but he got home. He’s OK. It was an amazing experience for him and a good learning experience for me.”
The Greenes told their story April 7 at Johns Hopkins All Children’s Hospital’s 26th annual Cystic Fibrosis Family Education Day. Deanna Green, M.D., director of the hospital’s Cystic Fibrosis Center, used the event to introduce new staff, discuss new programs and encourage families affected by CF to network.
“We have many new and exciting things happening at the CF Center here at Johns Hopkins All Children’s,” Green says. “This night was about helping our families see that, be a part of our vision for the future and be inspired to embrace the possibilities with us.”
Jacob Greene, 18, whose family lives near Seattle, was the star of the show with his message of how to deal with Cystic Fibrosis, a life-threatening, genetic disease that affects about 30,000 Americans by causing persistent lung infections and limiting their ability to breathe.
“CF is pretty complicated, but there’s more to life than that,” he says. “The thing I’ve tried to do is have CF revolve around my life and not my life revolve around CF.”
Jacob is an Eagle Scout, who participated in high school track and robotics for four years, went on a mission trip to Tijuana, Mexico, and conducted some cancer research.
“I’ve really tried not to let CF hold me back,” he says.
Lisa Greene is an international public speaker who has co-written the book Parenting Children with Health Issues, which embraces the Love and Logic parenting program. She also has a daughter, Kasey, with CF, but many of her lessons could apply to any parent. She encouraged parents to empower their children to make choices and to let them fail when the stakes are low. Those lessons can avert later mistakes.
“This is a really common danger for us because we love our kids,” Lisa says of keeping kids--especially ones with health issues--from dealing with adversity. “We want to make it easier for them. But we need to consider if we’re taking away a learning opportunity from them.
“We need to raise kids who are good problem solvers.”
Jacob seems to see only possibilities ahead. He heads to Stanford in the fall with the eventual goal of going to medical school, presenting Lisa with another dilemma.
“As a parent, we want to say, ‘Yes, you can,’” she says, “but as a mother, I think, ‘I’ve spent my whole life keeping you away from bugs.’”
But as with the hike, Lisa finds her way to yes, as long as there is an option available if Jacob’s condition won’t allow him to interact with disease.
“The CF doesn’t have to stop them if that’s their dream,” she says. “It’s trying to keep that balance between hope and reality, but keeping it realistic hope.”
For CF parenting tips, visit Parenting Children with Health Issues, pcwhi.com. For information on the Cystic Fibrosis Center at Johns Hopkins All Children’s Hospital, visit hopkinsallchildrens.org/cf.
Jacob Greene’s Tips …
For CF Patients
- Wake up early
- Multitask during treatments
- Make sacrifices to care for your body
- Don’t always work; have some fun
- Maintain a good attitude
- Give kids the freedom to make choices
- Hold them accountable
- Be supportive