The T1Dictionary: The power of community
This National Diabetes Awareness Month, eddii will be celebrating the amazing T1D community with a realistic view of the ins and outs of their daily lives, with new words and relatable definitions to match - introducing the T1Dictionary!
To kick off our 'T1Dictionary' series, eddii interviewed an insightful guest speaker, who has lived the real meaning of 'commyounity' in the T1D world. Danielle Halibey is a writer and Mom of three: Two sons, ages 1 and 6, and a 4-year-old daughter, who has been newly-diagnosed with T1D herself.
Here's what Danielle had to say on our first topic: 'The power of community’.
How important is your T1D ‘commyounity’? Navigating the world of T1D is no walk in the park (unless that park has a sugar-free lemonade stand and a whole bunch of benches for low-sugar breaks, that is). However, within the embracing arms of a super-supportive community, (or as eddii has cleverly coined it, commyounity), the journey becomes a little less daunting and a lot more joyful.
How do you envision your T1D community?
It’s like a vibrant tapestry, woven together with threads of support, encouragement, and shared experiences. Diabuddies and their family, friends, colleagues, peers, etc. are like ever-present cheerleaders, offering a helping hand and a listening ear whenever it's needed 📣.
When your daughter was first diagnosed, what did her ‘commyounity’ look like? It was not a good time; but my baby girl, Mykhaila, my husband, and I were all very fortunate to find an incredible support team in her doctors, nurses, diabetes educators, and our amazing family and friends on-call at home.
The wonderful folks at JDRF came to the rescue with a diabetes support “welcome” bag jam-packed with goodies, resources, helpful how-tos, etc. One of the stars of the show was none other than Rufus, the teddy bear with diabetes (thoughtfully imagined with little “prick” patches on his paws and tummy to let my girl practice blood sugar checks and power through insulin shots).
With Rufus by her side, my daughter had a constant reminder that she's not, nor ever will be, alone in managing this condition, and now, T1D kids everywhere can lean on eddii in a similar way, for learning and companionship in a much more interactive way.
How did you feel when your daughter was diagnosed?
To be honest, I felt a little bit of guilt at first. Like it was my fault that Mykhaila was diagnosed, because I’m T1D myself. I worried about everything. Would high onset blood sugars affect her health, long-term? How would she experience her first low blood sugar episode - I’ve had some pretty scary lows in my time. Would diabetes throw a wrench in her carefree “kidness”? My diagnosis came when I was 20 years old, so all the high-maintenance management involved in my diabetes care never really eclipsed my childhood.
Truth be told, we were also very overwhelmed. Raising three kids is tough work to begin with, but adding a chronic condition like T1D to the mix just about maxed out our stress meters. We wondered how our other two kids would react to Mykhaila getting the lion’s share of our attention.
My husband and I didn’t feel lonely, but we could see it and sense it, big time, in Mykhaila. There’s also been quite a few times in the last few months when we’ve had to press pause or course-correct during outings or activities in order to troubleshoot high or low blood sugars or spend some time just getting our peanut adjusted to new T1D “stuff.” How have you tried to overcome that loneliness as a family?
Two words: dance parties! Mykhaila’s dance teacher and class all know that she has T1D and they support her whenever she needs to take an extra break during ballet to have a snack, get a quick bolus, or have me or her dad reconfigure her leotard and tights to fit around her pod site better (her studio has been beyond understanding and accommodating, especially when she had her June recital only a few weeks after her diagnosis). Outside of class, whenever Mykhaila is running high, we’ll queue up Danny Go on YouTube, toggle to an especially-aerobic singalong, and dance like nobody’s watching. After a handful of fam dance numbers, her numbers start to come down, and we all high-five to celebrate. Speaking of which, Mykhaila loves eddii’s happy hour and watching eddii dance!
How has your T1D community developed for you and your daughter since?
A lot of it happens through online platforms, social media, and email blasts. We’ve been able to swap tales, laugh and jest together, and share tips and tricks to make life with diabetes a little bit easier.
How has your experience been using eddii, and how has he helped?
We absolutely LOVE eddii. Everyone in the family does, actually! Once we started using the app, our oldest made a comment about wanting his own eddii—which prompted Mykhaila to say “I know, K, but you don’t have DIDABETES (that’s how she pronounces it)!” It was accurate, of course, but it provided an even greater teaching moment for us to say “well, yes, but eddii doesn’t have diabetes, either! He’s just a helpful friend.”
All of our kids have enjoyed playing games with eddii, but since Mykhaila has spent the most time with him, she’s built a great relationship with her buddy. She gets nervous when she sees eddii “sick” or not looking good (when her blood sugar readings are high, he’ll get clammy with dizzy-looking eyes or even brown and crispy), so she’ll sit tight for a bolus or happily jump up and start to dance around or do something active to bring down her sugar. If that’s not T1D 'commyounity' at work, then I don’t know what is! eddii makes Myk’s T1D management less of a chore, with games, rewards, and fun, but it’s also not work, because she wants to help her friend feel better.
The sense of accomplishment we see in Mykhaila can’t be overlooked, either. When Mykhaila heard that eddii had “diabetes quizzes”, she was elated. She beams when she gets the answer right. For now, though, we’ve loved how eddii gets her thinking about better choices for life with T1D.
How do you envision your family's journey with T1D so far, and how has your T1D community played its part?
You know, our family’s journey with T1D is still very much a work in progress. A lot of what we know or thought we knew about diabetes is nuanced when it involves a child living with the disease. The “time in range” considerations are different; heck, the entire range itself is more flexible.
Fortunately, Mykhaila’s endocrinologist has been a total rockstar. From day one, he’s been in her corner, rooting her on, keeping her spirits high, and grounding us/keeping our expectations down-to-earth, at the same time. He reminds us that, sure, Myk has a compromised pancreas, but that’s the only thing that’s compromised. He was diagnosed himself—at only 2 years old (even younger than our mini!)—so we’re proud and inspired to have him on our T1D team.
And since this disease has been in our orbit for close to 15 years now, we’re no longer hesitant to let people know that 1) Mommy has diabetes and 2) so does Mykhaila. We might not go into too much technical detail with certain friends or family as we do with Mykhaila’s Pre-K teacher and school nurse, but when people have questions, we answer them as comfortably as we can!
Are you looking forward to new community features within the eddii app?
We’re thrilled to hear that eddii will be launching new community features soon! We’ve loved being able to cheer her on and champion her T1D journey via the friendly health challenges that “Guardians” (aka, what eddii calls parents or other caretakers) can pose. And we’re always happy to get the real-time high or low Dexcom alerts, because it makes us more proactive altogether. But as Mykhaila gets more acclimated to T1D life, we look forward to her connecting with relatable peers through eddii.
What advice would you give other T1D parents on this journey?
Not to sound cheesy or even in bad taste (because like I said before, humor really helps), but in all seriousness, stay thirsty when it comes to knowing more about T1D. Don’t be afraid to take full advantage of the resources and advocacy groups that exist for the T1D family. These are filled with collective experiences, new friendships, and opportunities for your child to embrace their inner superhero while connecting with others who share their journey. They help to keep your spirits high and your eye(s) on the prize: controlled diabetes and the adoption, practice, and maintenance of healthy habits.
If you wanted to expand your community, how would you go about that?
Firstly, if socializing isn't your thing, that's completely understandable and valid. You don't have to be a master of small talk, a socialite, or an influencer (check the Gram, there are hundreds of ‘t1’ handles you can peep and follow—including eddii!!)
Attending virtual events or webinars hosted by organizations such as JDRF or Beyond Type 1. These events bring the community together from the comfort of your own home, giving you the space to learn, connect, and engage at your own pace.
Participate in social media groups to connect with other T1D families and share experiences. Being a part of these groups can provide a sense of belonging, where you can ask questions, share tips, or just blow off some steam with like-minded people who "get it."
Danielle and her family's experience has truly highlighted the importance of kindness, understanding, and being compassionate toward your own situation. If you know anyone that can relate, remind them that they’re doing their best, and every effort made to engage with their ‘commyounity’ can bring more joy, understanding, and support into their lives 😊