It was midway into a parents’ session on positive caregiving at the annual Children with Diabetes Friends for Life conference in Orlando, and a mother in the corner of the room was crying. Feeling alone and overwhelmed by the new task of raising a toddler with Type 1 Diabetes, her emotions overflowed.
“I’m exhausted,” she said, tears pouring down her face. “And I’m alone. I’m a single mom and I’m scared at night and I’m worried in the day. I have no one who gets this, no one who really understands.”
As the session went on, parents began shifting their seats over toward the crying mom. One by one, they began talking to her, the steady hum of that sidebar support wafting over the room as the session continued. If it had been high school, the teacher would have stopped the side chatter. But at Friends for Life, that’s exactly what’s supposed to go on.
From July 1-6 people with diabetes, parents, grandparents, siblings, loved ones and friends totaling over 3,000 gathered at Friends for Life. They met up for meals and merriment, banquets and bopping to music. They raced around a sports center and frolicked in a pool. But the real meat of what Friends for Life is about – education, empowerment and emotional support – happened, as always, in the educational sessions.
In a session on burnout led by Korey Hood, PhD and Jill Weissberg-Benchell, PhD and CDE, both experts in psychology and diabetes, parents of children with diabetes and adults with type 1 diabetes, side by side, shared and discussed burn out from every angle, exploring the why’s, how’s and how-to’s of avoiding and battling burn out.
As serious as the talk was, people still laughed. For example, just after Weissberg-Benchell said people need to remove blame and shame from daily diabetes life, a mom talked about how she “should” do something.
“You need to stop ‘shoulding’ on yourself,” Jill said, to laughs in the room.
Down the hall, siblings of children with diabetes were involved in an intense and unique session: a chance to voice – without judgment – their feelings about having diabetes in their house. It was a private meeting, not even a reporter there to write about it was allowed in. But the kids shared their thoughts anonymously on Post-it’s and displayed them outside the room.
The impact of those tiny notes holding such profound thoughts was powerful. Simple words like “fear” or “pride” are on some. Others get more specific. ‘I hate that diabetes invades our lives.”
There was the chance to drill down on the technical as well. Renowned diabetes educator Gary Scheiner led a packed room through the details and intricacies of the glycemic index, surprising even some of the most seasoned diabetes pros with some tips and facts (for instance, pasta has a lower glycemic index than rice).
Around the corner, another session gave folks a chance to get up close and personal with some of the most inspiring famous names in diabetes. World Ironman champion Jay Hewitt – an adult with Type 1 – spoke in an intimate setting about the challenges of choosing his sport and the way he learned that he – and anyone – can rock any challenge, even with diabetes on board.
And there’s a funny thing about celebrities at Friends for Life: they’re just one of the gang. Hewitt and others could be seen waiting in line (and chatting up others) in the hotel coffee shop. They wore their wristbands of inclusion (Type 1’s wear green wristbands, others wear orange) with the same pride as every other person attending.
Each session at Friends for Life was its own special experience, and each one came with the overarching feeling of support, acceptance, family and just plain “we totally get you.”
“When we go to FFL, we are embraced by a community who understands us,” said Sarah Meidi, a D-mom who drove down with her family from Wisconsin for the event. “The siblings have siblings who share their everyday issues. Meredith – my daughter with diabetes — isn’t ‘always the only one’ with D. And I get refreshed being with other parents who get it.”
This year, Friends for Life was, as it always is, big and flashy; it was powerful and poignant. But at the end of the day, what happened with the crying mom in the parents’ session is what Friends for Life is all about.
Seems like you had a positive experience. Are CWD events only for children with diabetes and their families? Would attendance benefit someone diagnosed with T1 as an adult?
As that crying Mom, I cannot fully express my gratitude for the superheroes that rescued me that day. Only 7 months out from my daughter’s diagnosis, I remain in awe of the families that have been battling this challenge for years. I hope to not only emulate your strength, but also your kindness in the years to come. The unconditional love I felt as a “first-timer” is a feeling I will never forget. I hope to return to the FFL conference, and hope to one day return the support that was so freely given to me.