February’s “Heart to Heart: T1D Caregiver Spotlight” is on Erin Rison. Erin is a realtor with Watson Realty Corp. and also serves on our Orlando Board of Directors as the Government Relations and Advocacy Team Chair. Her youngest child, Belle, was diagnosed with T1D on October 26, 2007, shortly after her 2nd birthday. This year will mark the 15th anniversary of that diagnosis.

Erin and Belle became involved with advocacy just a few months after Belle’s T1D diagnosis. They lived in South Carolina at the time and participated in a “Promise to Remember Me” in Columbia with Majority Whip James Clyburn. Erin and Belle were there to talk about their life and struggles with T1D, and funding for research for a cure. “I’d never met with a member of Congress previously. It was just us and two other JDRF volunteers. I was so nervous, but the Congressman was so attentive and kind to Belle and asked us questions to better understand. That meeting, followed by others, sparked a true passion for advocacy in me,” said Erin. “I had a new appreciation for the power and influence constituents have in trying to inform their Representatives and Senators about issues so important to us.”

In addition to what those meetings meant to Erin, she watched Belle develop her own strong voice and confidence in both public speaking and meeting with adults to tell her story. In 2011, Belle was one of the S.C. delegates for JDRF’s Children’s Congress in D.C. That week meant the world to her. For the first time, the Rison family was able to meet other families with kids diagnosed as young as Belle had been. Belle also watched kids checking their own blood sugar without their parents help, which inspired her to start doing the same thing that summer at age 5. She was able to meet Supreme Court Justice Sonia Sotomayor and talk to her about living with T1D. Since then, Belle has gone on to give speeches and continue with her advocacy work.

Since Belle’s diagnosis in 2007, Erin has done an amazing job as a T1D caregiver and advocate. She has gone through all the highs and lows with her family, and learned some helpful tips for caring for a loved one with T1D. 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?

Erin admits that she struggled a lot at certain ages, particularly getting into Belle’s pre-teen and teenage years, to have a smooth hand-off of responsibilities related to her T1D management. “I think throughout all of the stages, back to when she was very young, I worried about how much we’d discuss it with her,” explained Erin. “T1D is ALWAYS there, behind everything she does, but I worry a lot about how much is too much to check on it. I can’t possibly know what it’s really like to live with having T1D yourself. Like many parents, I try to empathize with what it’s like. I imagine that anyone with T1D, especially kids, get so sick of constantly hearing, “What’s your blood sugar? Did you bolus for that? How many carbs are in that?”

It’s a constant balance of wanting to respect your child’s privacy and independence as they gradually take on more medical responsibility and decision making as they approach adulthood, yet you also want to keep them safe and avoid complications. I don’t think I’ve always gotten that balance right. Obviously, my intentions are good, but it’s sometimes been a challenge about knowing when to pester my daughter and when to let her manage things. The last thing I want to do is make this more stressful for her, but I also want her to stay as safe as possible.”

While adjusting to life with a child with T1D, 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?

Even when Belle was very young, Erin wanted to make sure she was involved with decisions regarding her care. Belle went on her first insulin pump when she was just 3 years old. They considered three different types of pumps; each of the three companies allowed them to do a saline trial with the pumps to decide which would work best for her. Erin also did the saline trial, so she could better understand what Belle might be trying to tell them about the experience, but they wanted her to feel like she still had some control and say in her treatment and management.

Shortly after Belle’s diagnosis, a JDRF volunteer stopped by the Rison house for an appointment to make sure they were doing okay and if they needed any advice. The volunteer’s daughter had also been diagnosed at a young age, and she was a teenager at that point. She shared various stories with Erin, like when she hosted a sleepover for several girls with T1D since many parents are nervous about letting their child stay at someone’s house where they couldn’t check their BG overnight (this was before the ability to follow your child’s BG remotely via their CGM and a smart phone). She also started a volunteer JDRF walk in their town, since there wasn’t an official one at that point.

“She was such an inspiration to me, and she gave me a lot of hope,” said Erin. “After my first meeting with her, I realized we could either keep our heads in the sand and wish this wasn’t happening or we could pick ourselves up and make a difference. At that point, we decided we’d set two goals for ourselves: first, we’d raise as much money as we could to get to a cure for T1D as fast as possible. Second, we’d raise as much awareness as possible. Since we couldn’t cure our daughter yet, we believed the more awareness people have about T1D, the easier her path would be as she grew up and went out into the world while living with it. Since then, we’ve continued to work hard to meet those goals.”

Another huge moment of hope was when the Risons arrived for their very first JDRF Walk in March of 2008. They’d formed a team called “Belle’s Butterflies” and had worked hard to raise as much money as they could, which was very out of their comfort zone. When they started the campaign, they thought it would possibly just be their family of five walking as a team. However, they invited friends from the community and church to join their team, and had bright yellow team shirts created. On walk day, as the Risons approached the walk site with their jogging strollers (their kids were 2, 4, and 5 years old at the time), they suddenly saw what seemed like a big sea of bright yellow shirts in the crowd.

“As I recognized the faces of so many people who’d not only donated money but also their time that Saturday to come and support us in this journey, it was powerful and so meaningful,” exclaims Erin. “I appreciate every single person who supports our team each year to this day, but that first team will always hold a special place in my heart. They showed us we were not alone on this journey. Our daughter had a community of people who would walk this with her, both literally on the walk path that day, but also as we continued on this path through the years. It filled me with hope, gratitude, and strength.”

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?

“I’ve learned more lessons than I can count,” says Erin. “The first lesson I learned was to trust your instincts and advocate for your child. You know your child, and you know when something is wrong.” They took Belle to the doctor five times initially, where she was diagnosed with things like “a stomach virus” or nothing at all each time. Finally, a dear friend of Erin’s, who is a nurse, told her that they needed to have them check Belle’s blood sugar. Erin took Belle back for a sixth visit; this time, they finally saw their regular pediatrician who wasn’t available for any of the previous visits. Before Erin even asked, he suggested they check Belle’s blood sugar. Then, the pediatrician returned with the diagnosis and Belle was admitted to the hospital. At the time, Belle’s blood sugar was too high to read at his office, as many meters only go to 600. Once in the hospital, they learned her BG was almost 900.

“That lesson of advocating for my child has helped me throughout the last 15 years. Whether it’s fighting for an accommodation with the school, or not giving up with an insurance company or medical supply company, persistence, and the confidence that I have the knowledge to stand up for what’s best for my child has been a recurring theme on this journey.”

Although it’s a bit cliché, Erin explains that it holds so true that T1D caregivers can handle way more than they think they can. The diagnosis was so unexpected and really took her breath away. She felt completely overwhelmed and didn’t know if she’d ever be able to do all of this correctly. The doctors had her practice giving shots on things like sponges and oranges, but when she had to give Belle the first shot, she couldn’t help but cry wondering how they would manage all of this. Once they were home, she was so afraid of making a mistake. Erin was nervous to leave the house with Belle. “Thankfully, my husband carried the majority of the load those first few days at home. Even more importantly, he gave me the confidence and nudge to continue with our “normal” life, doing things like taking her to dance class, a day trip to a state park without cell service, and even a weekend trip out of town for a Polar Express experience,” says Erin. “I wanted to say “no” to everything, but I think getting back to daily life before you feel ready is important, even if you take baby steps with things in the beginning.”

“I think one of the most important things I’ve learned is that our life’s journey is rarely the same path we’d imagined it would be, and that’s absolutely okay. Particularly for parents like me, who didn’t previously have a family history of T1D, this just wasn’t something on my radar. Belle was the youngest of our three kids, who were all born within four years. I had a normal pregnancy with her, and she was a healthy, happy baby the first two years. After diagnosis, I almost felt like I had a little “mourning” period for the easier life I’d imagined for my daughter. I spent way too much time worrying about things in her distant future that I couldn’t control at that time. I finally realized to let that go. Yes, this is a different parenting life than I’d imagined, but it’s still been wonderful, fun, rewarding, and all of the other adjectives that make parenting such a beautiful experience, despite unexpected twists and turns.”

Why do you think it’s important for T1D mothers and caregivers to come together?

Erin thinks it’s crucial for T1D mothers and caregivers to come together, just like it is for people with T1D being able to connect with others having similar experiences. There’s something powerful in knowing you’re not alone. “When Belle was first diagnosed in 2007, we didn’t have all the social media groups and online platforms we have today. I didn’t even have Facebook, and it would be a few years before I could connect with anyone who’d had a child diagnosed as young as Belle was (at age 26 months),” says Erin. “However, thankfully we learned about JDRF. Being able to talk to other families, many of whom already had experience with what we were learning for the first time, was so helpful. Now, you can even connect through Facebook groups and virtual get togethers, but I do think the in-person events are still so important for connecting with others.” Erin believes connecting with other T1D caregivers helps mentally to be able to share experiences, advice, and just simply enjoy the fellowship of being with other T1D families.

What is the most important thing you would want other parents of children with T1D to know?

“I think some good advice I’d share with any parents of newly diagnosed children is to be patient with yourself. It’s okay to feel overwhelmed. Whether you already had T1D in your family or not, this is a change of course. Unfortunately, I think frequently parents also feel guilty after diagnosis. I know many of us wondered if there was one tiny thing we could have done differently to avoid this, even though we know it’s not that simple. The truth is, even if T1D runs in your family history, you did not choose to give your child this diagnosis. It’s no one’s fault.”

Whether the diagnosis is brand new or was decades ago, Erin explains that we all need to give ourselves some grace. Yes, it’s not easy. However, it can be done. Will there be mistakes? Absolutely. As anyone who’s lived with this for very long knows, T1D can be unpredictable. Whether it’s a growth spurt, or an adrenaline rush right before taking the stage or a big game, there will be days when you do everything right and the numbers simply don’t make sense. It happens. It’s impossible to control everything. You just have to keep trying your best, make adjustments, and try to avoid blaming yourself or your child.

Erin also thinks it’s important to take stock with everything and find what you enjoy the most. Take time to occasionally reflect on how far you’ve come; that will mean different things for different people, depending upon their diagnosis. Or instead, you can reflect on how far the collective “we” have come in the last century after insulin was first discovered and used in a person with T1D. “For us, I reflect on the last 15 years. It reminds me that although we don’t have an actual cure yet, I’m thankful for how much work we’ve done. Technology isn’t a replacement for a cure by any means, but better information, knowledge, treatment, and control help people with T1D avoid more complications and, hopefully, spend less time thinking about T1D throughout their day, says Erin. “We still have more work to do, to be sure, but I’m going to be part of the work to make things better for my family and everyone else’s, too.”

A True T1D Champion

Throughout the years, Erin has gone above and beyond to provide the best life for Belle. With many years of battling this disease under their belt, it hasn’t slowed the Rison family down one bit. Aside from involvement with JDRF and diabetes-related things, Belle is a busy, creative, and talented teenager. At her high school, she’s on the varsity ladies golf team and competed at Regionals this past year. She’s also part of the dance company program, which she loves, and a thespian as well. Belle also spends her time as the team manager for the school’s varsity softball team, a role she truly loves and takes very seriously.

Outside of school, Belle is very involved at St. Luke’s UMC and their youth group. She also teaches Sunday School classes to some of the younger children. Belle also loves to sew, and she’s very skilled with her sewing and embroidery machines. After experimenting with making extra vests for her own service dog, she started her own company, Belle & Eberly, which sells custom dog vests.

We believe that because of parents and caregivers like Erin, 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.