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<\/a>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 Breakthrough T1D\u2019s Children\u2019s 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.<\/p>\nSince Belle\u2019s 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:<\/strong><\/p>\n It\u2019s a constant balance of wanting to respect your child\u2019s 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\u2019t think I\u2019ve always gotten that balance right. Obviously, my intentions are good, but it\u2019s 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.\u201d<\/p>\n 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.<\/p>\n \u201cShe was such an inspiration to me, and she gave me a lot of hope,\u201d said Erin. \u201cAfter my first meeting with her, I realized we could either keep our heads in the sand and wish this wasn\u2019t happening or we could pick ourselves up and make a difference. At that point, we decided we\u2019d set two goals for ourselves: first, we\u2019d raise as much money as we could to get to a cure for T1D as fast as possible. Second, we\u2019d raise as much awareness as possible. Since we couldn\u2019t 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\u2019ve continued to work hard to meet those goals.\u201d<\/p>\n \u201cAs I recognized the faces of so many people who\u2019d not only donated money but also their time that Saturday to come and support us in this journey, it was powerful and so meaningful,\u201d exclaims Erin. \u201cI 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.\u201d<\/p>\n \u201cI\u2019ve learned more lessons than I can count,\u201d says Erin. \u201cThe 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.\u201d They took Belle to the doctor five times initially, where she was diagnosed with things like \u201ca stomach virus\u201d or nothing at all each time. Finally, a dear friend of Erin\u2019s, who is a nurse, told her that they needed to have them check Belle\u2019s blood sugar. Erin took Belle back for a sixth visit; this time, they finally saw their regular pediatrician who wasn\u2019t available for any of the previous visits. Before Erin even asked, he suggested they check Belle\u2019s blood sugar. Then, the pediatrician returned with the diagnosis and Belle was admitted to the hospital. At the time, Belle\u2019s 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.<\/p>\n Although it\u2019s a bit clich\u00e9, 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\u2019t know if she\u2019d 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\u2019t 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. \u201cThankfully, 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 \u201cnormal\u201d 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,\u201d says Erin. \u201cI wanted to say \u201cno\u201d 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.\u201d<\/p>\n \u201cI think some good advice I\u2019d share with any parents of newly diagnosed children is to be patient with yourself. It\u2019s 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\u2019s 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\u2019s no one\u2019s fault.\u201d<\/p>\n Whether the diagnosis is brand new or was decades ago, Erin explains that we all need to give ourselves some grace. Yes, it\u2019s not easy. However, it can be done. Will there be mistakes? Absolutely. As anyone who\u2019s lived with this for very long knows, T1D can be unpredictable. Whether it\u2019s 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\u2019t make sense. It happens. It\u2019s impossible to control everything. You just have to keep trying your best, make adjustments, and try to avoid blaming yourself or your child.<\/p>\nThroughout your child\u2019s T1D journey, what have been the biggest challenges you faced?<\/em><\/strong><\/h4>\n
<\/a>Erin admits that she struggled a lot at certain ages, particularly getting into Belle\u2019s pre-teen and teenage years, to have a smooth hand-off of responsibilities related to her T1D management. \u201cI think throughout all of the stages, back to when she was very young, I worried about how much we\u2019d discuss it with her,\u201d explained Erin. \u201cT1D is ALWAYS there, behind everything she does, but I worry a lot about how much is too much to check on it. I can\u2019t possibly know what it\u2019s really like to live with having T1D yourself. Like many parents, I try to empathize with what it\u2019s like. I imagine that anyone with T1D, especially kids, get so sick of constantly hearing, \u201cWhat\u2019s your blood sugar? Did you bolus for that? How many carbs are in that?\u201d<\/p>\nWhile 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?<\/em><\/strong><\/h4>\n
<\/a>Shortly after Belle\u2019s diagnosis, a Breakthrough T1D volunteer stopped by the Rison house for an appointment to make sure they were doing okay and if they needed any advice. The volunteer\u2019s 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\u2019s house where they couldn\u2019t check their BG overnight (this was before the ability to follow your child\u2019s BG remotely via their CGM and a smart phone). She also started a volunteer Breakthrough T1D walk in their town, since there wasn\u2019t an official one at that point.<\/p>\n<\/a>Another huge moment of hope was when the Risons arrived for their very first Breakthrough T1D Walk in March of 2008. They\u2019d formed a team called \u201cBelle\u2019s Butterflies\u201d 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.<\/p>\nWhat 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?<\/em><\/strong><\/h4>\n
<\/a>\u201cThat lesson of advocating for my child has helped me throughout the last 15 years. Whether it\u2019s 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\u2019s best for my child has been a recurring theme on this journey.\u201d<\/p>\n<\/a>\u201cI think one of the most important things I\u2019ve learned is that our life\u2019s journey is rarely the same path we\u2019d imagined it would be, and that\u2019s absolutely okay. Particularly for parents like me, who didn\u2019t previously have a family history of T1D, this just wasn\u2019t 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 \u201cmourning\u201d period for the easier life I\u2019d imagined for my daughter. I spent way too much time worrying about things in her distant future that I couldn\u2019t control at that time. I finally realized to let that go. Yes, this is a different parenting life than I\u2019d imagined, but it\u2019s still been wonderful, fun, rewarding, and all of the other adjectives that make parenting such a beautiful experience, despite unexpected twists and turns.\u201d<\/p>\nWhy do you think it\u2019s important for T1D mothers and caregivers to come together?<\/strong><\/h4>\n
<\/a>Erin thinks it\u2019s 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\u2019s something powerful in knowing you\u2019re not alone. \u201cWhen Belle was first diagnosed in 2007, we didn\u2019t have all the social media groups and online platforms we have today. I didn\u2019t even have Facebook, and it would be a few years before I could connect with anyone who\u2019d had a child diagnosed as young as Belle was (at age 26 months),\u201d says Erin. \u201cHowever, thankfully we learned about Breakthrough T1D. 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.\u201d 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.<\/p>\nWhat is the most important thing you would want other parents of children with T1D to know?<\/em><\/strong><\/h4>\n