Perspective/Type 1 Diabetes
Several weeks ago I received a friend request on Facebook from a man named Ryan. He lives in Hammonton and we have mutual friends, so I accepted the request. I had no idea how much clicking accept would affect our lives.
Ryan’s Facebook page showed two young children: his son Ryan holding a first-day pre-K sign, and daughter Avery with a sign for first grade. Further down, a fundraiser for the Juvenile Diabetes Research Foundation (JDRF) 2022 One Walk, South Jersey caught my eye. The first sentence of the team’s message stunned me. “My name is Avery and I was diagnosed on March 1st, 2022 with T1D.” That was the very day—March 1st—our 7-year-old son Casey was diagnosed with type 1 diabetes (T1D), but one year earlier, two weeks before his sixth birthday. Casey is in second grade, which meant he and Avery are close in age.
I quickly sent Ryan a message. “Hi! Nice to meet you!” In the T1D community, we always say “Welcome to the family no one wants to be a part of,” referring to the disease’s 24-7 demands, but then explain how welcoming and supportive this family is. It turns out he had read one of my articles on type 1 in The Hammonton Gazette, seen our Casey’s Clan biography on JDRF’s One Walk Family Team Champion page, and also received my JDRF letter inviting 650 families diagnosed with T1D in the last two years to participate in One Walk. Both Ryan and I marveled that our children, living in the same town only miles apart, shared the same day of diagnosis. I applauded his family for joining One Walk. Most importantly, I let him know they have our support, and we would love to meet them.
I shared my news with Casey, and he was intrigued. One week later, Avery and her family came to our home to meet him. Casey handed her a gift bag from JDRF. She was delighted and peeked inside. Pulling out a maraca, she laughed out loud shaking it. In that moment, I saw her big, charming personality and knew that she and Casey would get along splendidly. After a few minutes chatting with Ryan, all six of our children ran off to play.
I watched Casey and Avery while my husband Sam and I chatted with Ryan about their diagnosis stories, their strengths living with T1D, and challenges faced. They looked so happy. They smiled, laughed, ran around, climbed the playground equipment, and played hide-and-seek. This was the first time Avery and Casey had met someone their own age with type 1.
Casey kept playing with her even when, an hour and a half later, his siblings went upstairs to dinner, reconfirming that the meeting had indeed been special for him. We parted at sundown, but I knew this was just the start of a lasting friendship, for all of us.
Ryan later wrote me that Avery had a blast and was excited to meet Casey. Casey’s bright-eyed smile, ear to ear, gave witness to everything I already knew about the value of community. We have been blessed with community support and do all we can to show Casey he is not alone with T1D. But Avery showed him best of all.
Having T1D can be lonely when no one around you has it. Even I will never really know what it’s like for Casey to have the condition, despite closely managing it every day. And if I can’t truly understand what Casey is experiencing, imagine the general public’s level of understanding. As our Hammonton friend Mike, living with T1D for 22 years, explains: “I have always felt and still feel like it is impossible [for others] to understand the gravity of type 1. How much harder and more effort it takes to go about your day, let alone achieve what you want. Even people close to you don’t understand sometimes. Only people like you guys who immerse yourselves in it because you have to understand. It’s hard to explain. It’s very lonely sometimes.”
This October 16 Casey is representing South Jersey at JDRF’s One Walk, and Avery has already declared she wants to be a diabetes educator. They know that individuals and families with demanding diseases like theirs need community support. As our Hammonton friend Stephanie, who has lived with T1D for 43 years, says: “It’s so important to have support early on. The amount of information you need to understand is massive...My mind reels for all of you.” Recently-diagnosed Avery and her family have our support, and now Casey and his parents have theirs. Our advocating for others with T1D led to a special connection we never expected. It will help both our families manage its challenges, but most especially help Casey and Avery. I’m so thankful.