Diaversary

FACT: Four years ago today Frankie was diagnosed with type 1 diabetes. Four years ago today we were all diagnosed with Type 1 diabetes. It seems like a lifetime ago and it seems like yesterday.

POSITIVE: it may seem strange to some—today we celebrate!  

The Obvious: Frankie is alive. It takes insulin, carb counting, shots, blood tests, vigilance, patience, endocrinologists, diabetes educators, persistence, resilience, hospitalization, spirit, and determination—but he is alive. Before 1922, when a brave 14 year old, Leonard Thompson, received the first human injection of insulin—diabetes was a death sentence. Diabetes treatment has come a long way since then thanks to research and science that have created insulin, pumps, meters, glucose monitors, injection pens, and more. Thanks to YOU—who have donated to the fight against diabetes.

The Super Hero: What does feel like to be 6 years old and suddenly need to take injections 3 to 5 times a day? To stick a needle in your finger to draw up a drop of blood to check your glucose level 8-10 times a day? To learn how to monitor what your body feels like, what activities you will be doing, if you are nervous, scared, excited, happy, sad, what the weather is, and more—every minute of every day-to keep your glucose at a safe level? To be told you could have died if you waited one more day before seeing the doctor? To hear “my Grandma died from that,” “Uncle lost his legs to that,” “did you get it because you did xyz?” I will never know what it feels like—but I see—every day of these 4 years—I see –the Super Hero strength inside my son. Facing his foe with determination.

The Unsung Hero: 9 years old and you are rushed to Grandma’s house because your brother is very sick. Mom and Dad drop you off with tears in their eyes and reassuring words out of their mouths. How scary was that? Big blue eyes brimming with tears—that is how I remember Rachel that day—hugging me and not wanting to let go. She came home to a life turned upside down. Every action taken with precaution now—counting supplies, measuring food, drawing up insulin, packing kits, once, twice, four times—to make sure we got it right. Diabetes supplies all and everywhere. Cancelled plans. “How’s your brother?” “Your brother is so brave.” Packages coming for Frankie. Cards for Frankie. Parents trying to hide their tears and fears. How did that all feel? I saw—that you got this disease too on 8/23/10—and in the turmoil that was diagnosis—you never complained, and have not (even though you have reason!) in four years. Every day of these 4 years-I see the Unsung Hero—full of compassion, kindness, and love. Our daughter- a warrior in her own right.

Family and friends: We don’t know what it is like to live this life with diabetes without support. We are blessed to have had the backing of family and friends from day 1. We hear from others who have not been as lucky—and their stories are heartbreaking. Every day of these 4 years—family and friends have been a constant blessing to us. Thank you!

Advocacy: Diabetes is complex and widely misunderstood. Facing the misunderstanding was harder for us than the medical aspects of this disease. How do you explain such complexity? To get across that each person with diabetes is different—in how they care for their disease, what they need to successfully live a life with this disease, and as a child with diabetes—they need to be listened to—for they know best what they need and when they need it?  Advocacy—that is how. We are thankful to The American Diabetes Association who gave us tremendous support—all hands on deck help. We are thankful to the Village of Manlius—who allowed a boy and girl living with diabetes –a chance to raise awareness—one blue light at a time. The organizations that helped us create ‘What’s Your Type?” –Dazzle/New Dimensions, Bella Cigna, Bill Rapp Dealerships, Immediate Medical Care, The Manlius Library, Voss Signs, The Syracuse Silver Knights, Uno Chicago Grill, St Ann’s and more. (A special shout out to amazing Lois Ross- who believed in the power of a couple of kids and treated them like two of her own!) In these 4 years—if one person learned the facts about diabetes, and a myth or two  were dispelled—that is worth celebrating!

Hurdles: We have faced some pretty big ones and up ahead are more to come. That is okay—look how high we have already jumped! Without the tough parts in life—would we have seen the glory? Sitting the bench at basketball because of diabetes—would the basket at the next game have been as sweet? Two  kids—knocked down and getting up, knowing they will get knocked down again-but they get up and enjoy the time in between punches. We gave our kids notebooks in the early days of diagnosis—so they could write down their feelings that they didn’t want to voice out loud. We had a lot of notebooks year one, they don’t keep one anymore. They might need to again someday—but for today they are good. We celebrate that resilience and we learn to look at life through their eyes.

Everybody has something: Living with diabetes for 4 years we have learned that some of the greatest struggles in life are not seen. Each person you meet has a story to share, is jumping over their own puddles, is standing in their own storm. Some are hiding it behind a smiley face, a quiet manner, or some a rotten attitude. In living this life of “but he doesn’t look fat.” “I forgot he has diabetes because he looks so good” and “he never acts sick” we have learned to share our umbrella.  Everyone is getting rained on—but in sharing—we all feel a little less wet.

So today we celebrate—all this and more. Happy Diaversary!

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