December’s “Heart to Heart: T1D Caregiver Spotlight” is on Katie Roseborough, a podcast host, physical therapist, children’s book author, wife, and mother of three, living in Jacksonville, Florida. With a typically busy lifestyle, everything seemed to come to a halt on August 19th, 2020, when Katie’s daughter, Sarah, was diagnosed with T1D at just eight years old. Sarah was due to start the third grade the next day, but luckily virtual school was an option due to the pandemic, so she was able to stay home with her mom to learn how to “do” T1D while getting settled into their new normal.
On the day of Sarah’s diagnosis, an outreach volunteer with JDRF came to the hospital with a Bag of Hope that had Rufus the bear in it. Sarah, a HUGE fan of all things snuggly and cuddly, immediately bonded with Rufus the bear. She was extremely fearful of all the pokes and pricks at first, but Rufus helped calm her down. Almost a year and a half later, Sarah still has a sweet bond with Rufus and makes sure he’s tucked in to bed next to her each night.
Since Sarah’s diagnosis, JDRF was able to put the Roseborough family in contact with other T1D families who could support them. Now that they’ve experienced life with T1D, Katie says she enjoys providing encouragement and helping other newly diagnosed families like they were in the beginning. However, Katie decided to take it a step further: she started a podcast for T1D moms and caregivers called “The Sugar Mama’s Podcast.”
The Sugar Mama’s Podcast
“First of all, I LOVE podcasts so immediately after my daughter’s diagnosis, I started searching for all the Type 1 podcasts. While I found a handful of really good ones, none were designed for caregivers of T1Ds AND hosted by a mother,” says Katie. “I think moms have a very unique perspective to offer when it comes to caring for our kids; we feel big, fight hard, and, while this isn’t always the case, we are typically the ones doing the majority of the T1D management for our kids. Long story short, I wanted to hear from a mom and I wasn’t finding that. So, I thought… why not be the person who offers it?”
Katie wanted to offer an environment that was positive, encouraging, educational and funny… believe it or not. She says she’s always had a pretty good knack of finding the good and the humor in most situations and she wanted to share that with other type 1 parents. “I’ve found that if you’re not laughing about type 1, you’re going to be crying about it. I do plenty of both, but I prefer comedy over tears most days.”
“I think it’s so important for T1D moms and caregivers to come together and support one another because, otherwise, it’s extremely isolating and lonely. While you may have many other friends who are supportive and loving, they really don’t understand the constant mental, emotional, physical, and financial struggle that type 1 brings with It. It’s so nice to truly have people in your corner who “get it” and can answer questions or just listen to you vent when you need to.”
Katie has done an outstanding job stepping into the T1D caregiver role for Sarah and has gone above and beyond to help other T1D caregivers, so we wanted her to be able to share her experience in hopes it will help other families dealing with a T1D diagnosis. Below you will find some insightful, realistic advice and information that comes with being a T1D caregiver:
Throughout your child’s T1D journey, what have been the biggest challenges you faced?
“The biggest challenges for us have been dealing with change,” says Katie. “Obviously, a T1D diagnosis is a HUGE change in and of itself, but outside of diagnosis day, it has been the small changes that challenge us. Once Sarah has settled into a certain way of doing things, it is very difficult to get her to try something new. For example, convincing her to try different injection and pump sites as well as CGM insertion sites always proves to be a tear-inducing challenge.”
As a parent, “the mental burden of T1D has been challenging for us too. Some days it just feels so heavy and we are both just completely over thinking about it and making decisions regarding it.” When it comes to those difficult days, Katie says she has just learned to give herself grace as well as permission to not be “as on top of it” as she normally is. Although Katie says that might sound like horrible advice to some parents, it has really helped her to be okay with “just not caring as much” on days where she feels burned out. She explains that she doesn’t ignore it all together because that would be irresponsible and potentially dangerous for Sarah, but she throttles back her vigilance a bit for a day or two to give her mind a break. Once she’s feeling refreshed, Sarah jumps back into it the next day to continue caring for Sarah in the best ways possible.
While adjusting to life with a child with type 1 diabetes, are there certain things you found that helped you better manage their disease? What about something that helped give you hope when you were just getting started?
Katie claims that their Dexcom G6 continuous glucose monitor has been a huge blessing in helping give them peace of mind and better control with diabetes management. “Our faith, along with the support of friends and family, has been invaluable” throughout their family’s T1D journey. Katie is thankful to have a lot of family and friends in town that serve as a great support system. She says everyone has been very willing to learn about Type 1 and engaged with helping them care for Sarah. “Something that has given us hope is knowing some adults with type 1 who are living happy, full lives as well as meeting new friends with T1D,” says Katie. “It has been so good for Sarah to see that she is not alone and that many people with T1D have come before her and are really thriving in life.”
What is the most important thing you would want other parents of children with T1D to know?
“I would want them to know that the pancreas, while small and slimy, is a very complex organ and the Beta cells that get destroyed in type 1 do WAY more than just produce Insulin. I won’t go into great detail here, but that’s why trying to be a pancreas for your kid is so dang hard and frustrating; it’s more than just counting carbs, giving insulin, and managing blood sugars. That tip isn’t overly helpful, but I think it’s important to put things into perspective, so parents aren’t too hard on themselves. We all want pretty lines and in-range numbers all the time, but it really is pretty much impossible to achieve that all the time with type 1. Can you have great management? Sure! But perfect management? Never… at least not without sacrificing a fair amount of your mental and emotional well-being.”
Further, “kids with type 1 CAN eat pretty much exactly like they did before… if that’s what you want to do, of course. It will take a lot of hard work and trial and error on your part, but you can figure out how to use the Insulin and make it work for you. Sarah was 8, almost 9, when she was diagnosed so she knew this whole life before diabetes that involved the occasional donut and bowl of Lucky Charms. I think, for us, putting her on a low carb diet and restricting all the things she loved would NOT have turned out well. So, we just decided to figure out the Insulin instead and continue on with life as normal. It’s doable, for sure.”
What skills/lessons has raising a T1D child taught you? For a parent of a newly diagnosed T1D, how would you compare those feelings to now?
Katie says that having a child with T1D has taught her a great deal about patience, self-control, and humility. Patience and self-control because type 1 is frustrating; just when you think you’ve got things figured out, your child’s insulin needs will change, and you’ll have to make adjustments that are very often hard to figure out. “I don’t ever want my daughter to feel like a burden… because she’s not. Sometimes it’s tempting to let T1D get the best of my patience and have that frustration/annoyance reflected in the words I say, how I say them, and the body language that goes along with them. Thus, I’ve had to make a conscious effort to be more aware of and in control of those things. It’s not easy and I vent a lot, but I try my best to let my daughter take the lead on that. Like, if she’s frustrated or venting, I can join her, but not the other way around.”
Katie has also learned greater humility because type 1 is a constant reminder that you’re never fully in control even though you desperately want to be. “It’s never easy as a parent to watch your kid struggle and to know they are going to be dealing with this challenge for the rest of their life,” says Katie. “We want to fix it, but we can’t. We want in-range numbers all the time but It’s just impossible to achieve all the time. Talk about a humbling experience.”
“For a newly diagnosed family, those feelings of anger, frustration, sadness, and loss of control are more intense and magnified. It’s not that they go away with time, but they can seem less heavy. Time and experience certainly allow for better perspective and more effective coping skills… if you’re willing to let it, that is.”
A True T1D Champion
We believe that because of parents and caregivers like Katie, the children living with T1D in our community are given the support and care they need to succeed in life and in managing their disease. To anyone caring for a child with T1D, please know that you are not alone in the sleepless nights and heavy days. JDRF Northern Florida is here to help you and can connect you with a network of other T1D caregivers to share advice, struggles, and words of encouragement.
For more information or to submit someone for our “Heart to Heart: T1D Caregiver Spotlight,” please contact Brooks Biagini at BBiagini@JDRF.org.
The Sugar Mama’s Podcast is designed for moms and caregivers of type 1 diabetics. Hosted by Katie Roseborough, a T1D mom, the show features heartfelt and insightful conversations with other T1D parents as well as members and professionals connected to the type 1 community. Each episode aims to equip, inspire, encourage and inform those raising children with type 1 diabetes. Get ready to learn a ton and gain a new perspective as Katie and her guests discuss the ins, outs, ups, downs and all arounds of caring for a type 1 warrior. Visit www.sugarmamaspodcast.com to start listening today!