For families of children with an HIE diagnosis, the journey can be lonely.
Often, other families don’t look like ours. Their lives aren’t the same. Their routines are different.
Hope for HIE has been organizing retreats focused on moms for the last four years, which for so many women have been life-changing, giving them a chance to connect with moms they’d previously only known online.
But several of our families have wanted to go further, bringing those benefits to their husbands and children, and have organized their own family retreats.
And they can’t say enough to encourage others to do the same.
Forming a community
After meeting in the first unofficial HIE meetup, five HIE moms from the Midwest wanted to grow the tradition with their own families.
Three years later, they have created an annual tradition, bringing their families together for one amazing weekend, where everyone can be themselves.
Planning the weekend is a breeze since finding a home large enough for all five families that they reserve each year, and the drive is only a few hours for each family.
All five families come with their kids, their medicines and equipment, and of course tons of booze and food. Each family makes a meal, and everyone chips in with cleanup.
Husbands smoke cigars. Kids play on the floor. And moms stay up way too late snacking, drinking and laughing, and then have coffee together in the morning.
Being together truly feels like a community, Betsy Pilon said.
No one worries about leaving the room, because someone is always there to help with their kiddos, whether that’s not panicking over a meltdown, changing the video on their iPad or helping them with positioning.
“It’s the most relaxing weekend of my year, never have to explain anything, or worry about Drew,” Becky Kerrins said.
Since the tradition began, three new babies have been born, and the kids are all growing up together, Jill Uswajesdakul said.
“We've created this huge family where everyone is different, but that's what makes us awesome,” Jill said.
The annual tradition offers something for everyone, even hesitant husbands who have been able to connect with other HIE dads, which none of them ever would have done on their own.
Four moms who met at Hope for HIE’s annual retreat last year in Texas wanted to build on that connection, and decided to get their families together.
They picked a location in Des Moines, Iowa, which was a halfway point between their families. They communicated through Facebook messenger, sorting out details of who was free and when and booked a block of hotels. With a few hours of work, they had their weekend planned.
They shared meals and a lot of laughs, and even found an inclusive park nearby where their kids could play.
Describing what that weekend meant is hard to do without tearing up, Lindsay Vanzandt said.
The weekend allowed Cassie Gudmundson to meet other HIE families within a few hours of her, who she never had known before.
“It was so amazing to see these mamas again, and meet their families! I loved meeting each kiddo, and experiencing how great they are in real life! Also seeing all of our husbands connect as easily as we all did was so wonderful!” Cassie said.
Their advice to others who are considering a family meet up? DO IT.
“You will not regret it. I can not put into words how amazing this experience was. It is something I will never forget,” Cassie said.
Don’t let fear stop you, or worry about the meet up being awkward, Lindsay said.
“Don't be scared! The HIE experience creates an instant bond. It felt like we all had been friends for years,” Lindsay said.“My husband got to meet 3 other dads who just get it, and seeing our children play together was a dream come true,” Lindsay said.
Tips for planning a meet up
- Find families you want to meet with and think would be fun to spend more time with, and then focus on setting a date everyone will commit to.
- Finding a place to stay is top on the list. Some families like to stay in one home together, and use sites like VRBO or HomeAway to book them. Others choose to stay at a hotel and can reserve the rooms and families pay at check-in.
- Paying for the place can be easily arranged by exchanging money using several apps, including Facebook messenger or PayPal.
- Communication is key. Facebook messenger is a great way to communicate, along with texting. You can set a date, share location ideas, vote on a place to stay, plan meals and check in as you travel.
- Plan some activities to do together. That could be an outing at a park or finding a nearby pool or beach in the summer. Decide if you plan to cook or go out. If you want to cook, consider dividing meals up among families.
- And most of all, be open to connecting and having fun! Don’t put too much pressure on yourself, and get what you need out of that weekend!