The Best Thing Our CDE Said to Us at Diagnosis

Is caring for a child’s type 1 diabetes as scary as it first seems, or is it something you feel confident you can handle? A health care provider’s words at the time of diagnosis can sometimes make all the difference in a family’s outlook on the disease. Certified diabetes educators (CDEs) teach parents the nuts and bolts of how to manage a child’s diabetes, but their attitude often conveys much more. Just how big of an impact can they have on newly diagnosed families? Listen to what these D-parents remember from their first meetings with some particularly stellar CDEs.

Your Child Is Still the Same Kid

“Our CDE asked me to describe my child to her. The tears started as I talked about our rambunctious, smiling Joey who loved playing soccer and riding go-karts with his dad. We sat silently for a few moments after that, and then she told me with incredible confidence that Joey was still everything I just described… and by taking care of his diabetes, we would be making sure Joey could always be exactly who he wanted to be. As much as life in our family has been forever changed by our son’s diagnosis, she was right: Joey still plays soccer and rides go-karts (and now loves four-wheeling!), and he is still the same energetic kid he’s always been. Maybe even more energetic! I am grateful to our CDE for helping us see this was possible.”

—Sharon D., East Brunswick, N.J., mom of 11-year-old Joey

Your Health Matters Too

“Our CDE showed me a picture of the emergency directions on airplanes that tell people to put on their own oxygen mask before trying to help others. She told me that finding support for myself was the oxygen mask I would need to take care of my child’s diabetes. She followed this up by giving me contact information for family support groups and T1D mentor parents she knew of in the Chicago area. Keeping the oxygen mask image in mind, I was able to create a close circle of parents and families who have become an incredible source of strength for us. In all my grief and feelings of guilt, I don’t think I would have had the foresight to tap into the diabetes community had our CDE not recommended it.”

—Leanne W., Chicago, mom of 17-year-old Jeremy

Picture a Better Future

“On the wall in her office, our CDE has a big bulletin board filled with smiling faces of children she works with at the clinic. At our first meeting, she pointed them out to me — birthday pictures and holiday photo cards, photos of smiling kids playing sports, going to the prom, and proudly holding their driver’s license. She told me, ‘A picture is worth a thousand words about what life with type 1 can be. And these pictures are proof that diabetes doesn’t need to hold a child back.’ She then bet me that one day I would see my child’s own picture on her wall. This was part of what kept me going through a time of absolute darkness. It was also a huge milestone the day I was able to send our CDE a photo of our son at his first youth football game. It’s now on her wall where I hope it can give the same inspiration to other newly diagnosed families.”

—Danielle, Newton, Mass., mom of 9-year-old Andrew

Tap Into Available Resources

“Our CDE was a rock star in teaching us what we would need to know to take care of our daughter’s diabetes. We stuck needles in oranges, read food labels, and practiced calculating dosages until I had a glimmer of hope that I could do this at home. She also took time to get to know us to see what special situations our family might face and what she could do to help. I told her about my heavy work schedule, and she was able to give me information about the Family and Medical Leave Act and how this might give me some protected leave time to stay home with our daughter. This was such a relief, as I had been worrying since she was admitted to the hospital about what on earth I was going to do about my job! I was able to take several weeks off, and it made an incredibly positive difference in how we all adjusted.”

—Molly, Fort Myers, Fla., mom of 7-year-old Cara

Don’t Ask “Why?”; Ask “What Now?”

“At our first meeting, our CDE told us that she knew how tempting it would be for us to start searching the web nonstop for possible reasons why our daughter developed type 1 diabetes. She was kind but direct in telling us that this would only drain us of energy at a time when 100 percent of our effort was needed to establish excellent care routines. Good habits would be what helps our daughter live life as a normal kid, not spending hours digging through dubious information in search of some kind of ‘secret cure’ for T1D. To keep us on task, she gave us her 72-hour starter kit that included readiness checklists (e.g., had we stopped at the pharmacy to pick up the prescriptions?), a log for keeping track of meter checks and insulin, simple kid-friendly menu ideas that would help us practice counting carbs, and other practical information. Yes, I caught myself a few times sitting on my laptop searching, “why did my child develop diabetes?” But I kept the CDE’s words in my mind and did my best to stay focused on what mattered: our daughter’s future.”

—Wendy R., Utah, mom of 7-year-old Cally

 

Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.

 

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