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Diabetes Awareness Month: Creating A Community (Op-ed)

Diabetes Awareness Month: Creating A Community (Op-ed)

“Corinne has type 1 diabetes” I texted my wife, Laura. I knew I was committing the ultimate digital cardinal sin delivering such terrible news, but I needed Laura to hear this before she saw Corinne, our then three year old daughter. She was just diagnosed with a life-changing condition and Laura was on a flight home from a long weekend visiting a friend.

Hours earlier, Laura was waiting for her flight and we were talking about how Corinne had been drinking a lot of water lately. To be sure, Laura asked me to call the pediatrician and make an appointment. “Just as a precaution” we decided, our girl has been the picture of health since day one, she’s perfect.

Flash forward to 6:00 p.m., Laura is in the air, Corinne and I are in the exam room and I see on the doctor’s face that the news isn’t good. “Her blood sugar is 423. She has type 1 diabetes (T1D). There is no cure, but it is manageable. She’s going to be fine, but you will need to put in the work to manage her. This is serious though and you need to take her to the emergency room right away.” The air left the room, my world was crashing down but I had to keep it together as Corinne looked at me while the doctor spoke. She didn’t know what T1D was, she didn’t know what blood sugar was, she just knew that if something was wrong, Daddy would make it better. We calmly packed ourselves into the car and got ready to go get Mommy at the airport on our way to the Children’s Hospital of Philadelphia (CHOP).

By the time Laura got into the car, she’d (mostly) composed herself but Corinne knew she had been crying. “It’ll be ok, Mama. You don’t need to cry.” Corinne had no idea why her mom was crying but she knew that everything was going to be ok. We weren’t so sure.

After a whirlwind three-day stay in the hospital, we reentered the world shell-shocked, changed, and frankly terrified. The world looked the same, but everything was different. Diabetes impacts every single thing Corinne does; snacks, meals, playtime, bedtime. We’re watching her blood sugar at all times trying to keep her in a safe range. If her blood sugar drops too low, there are risks of seizures, unconsciousness, and even death. If it’s too high,there are risks of diabetic ketoacidosis, coma, death and an increased chance of long-term complications such as kidney and nerve damage.

Every minute of every day we’re walking a tightrope just to keep our daughter safe. Everyone knows about diabetes but what we have learned is that very few people know that T1D requires 24/7 management, or the fear parents feel when they see a low blood sugar at 3 a.m., the worry of what life looks like when their fledglings leave the nest, the anguish we feel when our children cry about insulin injections or insulin pump site changes, or the helpless feeling of watching politicians argue over protections for people with preexisting conditions.  

A year and a half since Corinne’s diagnosis, life isn’t so scary but it’s by no means easy. She knows she’s the only “diabetes girl” at her school but her condition doesn’t make her feel different. We don’t let her see the stress it causes us. We don’t call diabetes a disease and we NEVER call her “sick”; diabetes is a condition and it’s just the way her body works. Some people can’t eat peanuts, some people wear glasses, some people use wheelchairs, and some people need insulin injections. Just like some people have green eyes or curly hair. 

The difference, though, is that Corinne and other “diabetes kids” can’t recognize each other by appearance alone, which is ironically isolating considering the prevalence of T1D. I learned this when I went public with Corinne’s condition on my social media and was contacted by more friends and musicians than I could ever have expected. “Diabetes people” are out there and The Orchard is in an incredible position to connect the T1D community through culture and shared interests. The power of music as a driver for social acceptance cannot be overstated. I’m sure that other people living with T1D are just like Corinne and feel excited and, well, normal, when they realize that someone they know or a celebrity is just like them. It’s my hope that with The Orchard and JDRF initiative, we can help raise awareness of the T1D community within the music industry and beyond.

Our family was introduced to JDRF before we even left the hospital. The incredible staff at CHOP told us all about the organization that would come to be our lifeline as we navigated this seemingly impossible situation. Laura and I spent countless hours on their website and social media, learning tips and tricks of diabetes management, about the latest research, and reading stories they shared about other kids and families just like ours. Seeing these happy, thriving kids made it possible to believe that life would feel normal again- that we would be happy again. A few days after we got home from the hospital, JDRF even sent Corinne a Bag of Hope with a teddy bear named Rufus, who also has diabetes. He has a favored place among Corinne’s “buddies.” 

Through JDRF, Laura and I have been able to realize what Corinne knew all along – it will be ok. JDRF’s research and advocacy are helping people with T1D live longer, healthier, and easier lives. As parents, the work they do is invaluable and the stories JDRF shares of people with diabetes managing and overcoming the minute-to-minute challenges are a constant reassurance that we are not in this alone. 

While it took Laura and I some time to adjust to our new life, Corinne never missed a beat. She has been her brilliant, happy, hilarious self since we walked out of that hospital on March 14, 2019, and hasn’t looked back. T1D hasn’t stopped her from doing a single thing she wants to do. She is a ray of sunshine to everyone who knows her and inspires us daily. Our girl is perfect. 

Diabetes Awareness Month: Creating A Community (Op-ed)

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