Our son Casey was diagnosed with Type 1 diabetes on March 1 last year, just before his 6th birthday. That day changed our lives forever, especially his. It scared us because he could have died and because every day we now hold his life in our hands. Managing Type 1 is a 24-7 job that is as complex as it is relentless. His day of diagnosis, like a child’s birth or a wedding day, has an anniversary, in his case, marking each year lived since diagnosis. For people with diabetes, this day is called their Diaversary. Some parents of Type 1 children might not want to celebrate the day their child was diagnosed with a life-changing disease, but we just did, with gusto. And we will again every year. Here’s why.
We all know that life is precious; that it should be cherished and protected. But that’s often just an abstraction until we experience the here-and-now anguish of nearly, or actually, losing someone dear to us. Diabetes has the effect of keeping that possibility at the front of your mind. Not only does Type 1 diabetes often threaten life at initial diagnosis, but it shows us daily how fragile life is by asking us, imperfect beings, to take over the job of an essential organ. You become keenly aware that every complex decision of the many you must make will have an effect, though not necessarily the one you intended. Waiting for its impact can be nerve-wracking, and you struggle to understand what seem to be uncontrollable outcomes despite your best efforts. Indeed, this first year with Type 1 has put our problem-solving, self-confidence and emotional strength to test every day.
A Diaversary recognizes the precious and precarious nature of life while celebrating one’s efforts and accomplishments to improve the diabetes journey for self and others. It’s a day to reflect back on and appreciate the year’s successes in tackling this demanding chronic disease. When Casey was diagnosed, he went from being a carefree little boy to getting needles throughout the day, wearing diabetic equipment attached to his body, listening for and responding immediately to blood sugar alarms, having all his food monitored and scheduled, feeling the draining effects of blood sugar that is too low or high, and, by its very nature, made to feel different by having Type 1.
Casey, however, has amazed us with his resilience and strength. Yes, he has some difficult days, but he doesn’t focus on the hardships of diabetes. Instead, he quickly started to take control of his condition. He taught himself how to count carbs and test his blood sugar, what constitutes a safe range for blood sugar plus recognizing when it is dropping too low, and which diabetes supplies he needs to carry when he goes out. As I see him counting carbs on a nutrition label, waiting to get an insulin injection before he can eat, grabbing a cheese stick for a carb-free snack or retrieving a juice box to treat low blood sugar, I’m blown away by how he now takes it all in stride. To him, this is his normal and he is doing his best to live it.
We have tried this year to show Casey that his life can be normal, healthy and long like everyone else’s. Diabetes need not limit his future nor quash his dreams. He plays soccer, does mixed martial arts (MMA) and all other activities that children without diabetes enjoy. We have shown him how he can overcome obstacles. As we and others have advocated for people with diabetes, he sees that he is not alone and that there are many people happy to help people like him and fight for a better future, whether it be by developing more advanced equipment, improving quality of life or finding a cure. We have advocated by writing articles, podcasting and holding fundraising events that Casey excitedly joins. He has witnessed how advocating helps others like himself, strengthens their resolve, and, in so doing, brightens their futures.
For Casey’s first Diaversary, we celebrated to the max. Over the weekend, he participated in a North American Grappling Association Jiu-Jitsu tournament, where he won three silver medals. He had a special cake designed per his specifications: chocolate cake with chocolate chips and multi-colored icing, the image of his favorite pro wrestler on the cake and a cookie sword through the top. He received special gifts, including pro wrestling Monopoly, a Batmobile Lego set and a knight’s sword. He chose our other activities as well, including playing Monopoly and visiting a children’s arcade. And, importantly to him, Casey picked what he ate, which included chocolate chip pancakes and sushi. To top off, he brought cupcakes to school to celebrate with his classmates and teachers.
The truth is, we could have lost Casey last March 1. So, we celebrate that he is still with us and doing OK and that we see his smile and witness his joy at being celebrated. We applaud his strength, resilience, accomplishments and advocacy. We can’t make his chronic disease disappear, but we can decide how to respond to it.
Sometimes life confronts us with challenges we can’t imagine finding the strength and know-how to meet; how we rise to them defines us and shapes our legacy. So please celebrate the warriors in your life. For Type 1 families, a Diaversary marks the day their warrior began the journey with diabetes by celebrating life and the year’s successes and good works. Cheers to that, I say.
Lisa Seitles
Hammonton
Lisa Seitles and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.