For one HIE mom, hope has taken her across the country this year.
Betsy Pilon, president of the Hope for HIE foundation, has traveled from her home state of Michigan to Texas, New York and New Orleans so far this year, making her slogan for 2016 “Have hope, will travel.”
For Betsy, the trips to meet other HIE families at a retreat for moms, the first annual Hops for Hope fundraiser or to meet in person one of the original founders of Hope for HIE is a part of healing in her HIE journey.
“Whether it's meeting for coffee with a local parent, or flying halfway across the country with your spouse to meet some amazing friends in their home city, you're going to be positively impacted and grow more through this journey. It's something tangible to hold onto, reflect back on, and carry you through when that next challenge comes up in life,” she said.
The trips have also allowed her to build friendships that started online, she said. Finally meeting those people face-to-face creates a whole other bond, she said.
“We've come a long way with technology, but nothing replaces that in-person connection,” Betsy said.
Through the annual retreats for moms and her other trips, Betsy has met more than 100 fellow HIE parents and family members, a connection she yearned for even early on in her journey. Meeting families across the world online was a huge help, but she still treasures her first meeting with a fellow HIE mom, Gabi Burman, only a few months after her son Max was born, Betsy said.
“That really lit a spark that confirmed the power of community, and how a scary commonality can turn into something positive,” Betsy said.
“There is something with every in-person connection that is shared, whether I am the one meeting someone or not, that you feel you are there in the midst of this incredible moment. It's affirming that ‘hope is in the journey.’ Those connections are that hope.”
She knows all too well the anxiety and nerves that come with meeting someone new for the first time -- she has felt it every time. She worries if she will live up to that person’s expectations of her, and vice versa, she said.
But she remembers Hope for HIE’s mission of support for other families, and she has never been disappointed, she said.
By meeting other families, Betsy is living out Hope for HIE’s culture by embracing the power of community, and hopefully encouraging others to do the same, helping them break past the nerves and anxieties, and take the plunge, she said.
Her plunges have taken her ziplining in the Smoky Mountains, next to a campfire in Michigan, to breakfasts overlooking Central Park and sweating it out in New Orleans humidity.
“Each moment and connection truly impacts my world, and I see those moments, big and small, impact now hundreds of others, and it's quite incredible,” Betsy said.