If you’re reading this letter, then we have probably already walked a similar diagnosis story together. From the deafening words of “Warren has type 1 diabetes (T1D)”, to the trauma-filled adrenaline that helps us become an expert. We kept it together for our sweet child. Like you, we carried feelings of fear, guilt, and uncertainty. We bravely learned to accept T1D into our life’s journey. When our son was diagnosed at two years old on September 29, 2022, our family stepped up to be there for him. We learned all we could from doctors and online support groups, while he forced down more juice and pretended his IV was a web shooter. We are connected through our shared experience. Connected by the stress of hearing those monitors and persistent alarms. Connected by our shared resilience of doing our best to make this T1D life as sweet as it can be.
After the shock of diagnosis settles, the new routines start to become well-traveled. That’s when I began to seek others who knew this path well. With Breakthrough T1D families, I could share the struggles of how it seemed so obvious now, how sunken his little face was. Or how clear all the signs are, yet how easy it is to brush them off as something weather or illness related. To share the victories of how I helped Warren have the words to advocate for himself. When I heard him say his “sensors are a tool just like when someone’s eyes don’t work so good, they need glasses all the time; he has a spot in his belly that doesn’t work so good, and he needs this to help take care of his body”. I sought to connect to others, while Warren could experience how he wasn’t the only one sick of being poked and excited to get unicorn numbers.
We joined the first Breakthrough T1D Walk New Hampshire last year because no one should feel like they walk alone on this T1D journey. When we get involved in T1D activities, that’s the impact we make. I encourage you to go! Go to the T1D events when you’re tired, go when it’s new and raw, go when there’s a billion other things you must do as well. Because connection is the impact, not feeling alone is the impact, making breakthrough friendships is the impact. At the Walk, my kids got to connect with others during fun activities like the Rufus clinic, hair dying station, and outdoor games. We all got the opportunity to get swag and make a positive difference for other T1D families.
Like your family, we have raced down to our child’s room to save them from a low, we have made the steps to meet them where they’re at for finger sticks so they didn’t have to stop what they are doing, we have added their supplies to our bags so they can roam free. But T1D families know that it feels like no one else sees the endless steps we take. Well let’s show them. Let’s walk together with our families, friends, and allies. Let’s show our communities the high and low steps we take every day. That their donations directly support our lives. Let’s walk together for breakthroughs.
In T1D Solidarity,
Amanda Perry
Amanda Perry, Team Captain of T1D’s of Monadnock, Breakthrough T1D Walk NH